subject:"Re\: \[TMIC\] Medications"

No, never.  

The seizures will end my career if I don¹t get them under control.  I came
back better and everyone was impressed.  If they see me getting them again
they will indeed replace me by next semester.

Dalton




From: Janice Nichols 
Date: Fri, 10 Sep 2010 22:18:15 -0500
To: Dalton Garis , ,
, Barbara Alma 
Subject: Re: [TMIC] Medications

Not to my knowledge.But, if it works on the spasms, that is part of your
problem taken care of.
Did you have seizures before TM?
Janice

From: Dalton Garis <mailto:malugss...@gmail.com>
Sent: Friday, September 10, 2010 12:22 PM
To: Janice Nichols <mailto:jan...@centurytel.net>  ; j.d...@shaw.ca ;
tmic-list@eskimo.com ; Barbara Alma <mailto:balmat...@aol.com>
Subject: Re: [TMIC] Medications

Does it work for seizures??

Dalton




From: Janice Nichols 
Date: Fri, 10 Sep 2010 10:20:03 -0500
To: Dalton Garis , ,
, Barbara Alma 
Subject: Re: [TMIC] Medications

Remember you can work up to the amount you need.   If you start with the
zomby-business, cut back and see if that will work for you.Or, just take
it
a little before bedtime.   That is what I do.
Janice

From: Dalton Garis <mailto:malugss...@gmail.com>
Sent: Friday, September 10, 2010 5:31 AM
To: Janice Nichols <mailto:jan...@centurytel.net>  ; j.d...@shaw.ca ;
tmic-list@eskimo.com ; Barbara Alma <mailto:balmat...@aol.com>
Subject: Re: [TMIC] Medications

OK;

I¹ll suggest it to my neuro.  He has been steering me away from the
heavy-duty meds because I already take 40 mg of Prozac (have for 20 years)
and he is afraid it will zomby-ize me.

Dalton




From: Janice Nichols 
Date: Thu, 9 Sep 2010 22:22:34 -0500
To: , , Barbara Alma

Subject: Re: [TMIC] Medications
Resent-From: 
Resent-Date: Thu, 9 Sep 2010 20:22:23 -0700

There's that word again  -  spasms.I swear by baclofen.Had to change
the number taken and the times of the day when to take them, but once that
was figured out, I could sleep.Sorry to sound like a broken record and I
realize that we are all different too.Sure wish it would work on you
guys the
way it works for me.
Janice

 
From: Barbara Alma <mailto:balmat...@aol.com>
Sent: Thursday, September 09, 2010 10:16 PM
To: j.d...@shaw.ca ; tmic-list@eskimo.com
Subject: Re: [TMIC] Medications

Hydrocodone: I personally do not get any relief from my nerve pain,
burning/freezing or hyper sensitivity.  I take it for other pain, and I also
take it to sleep occassionally.  Before anyone states that it isn't a sleep
aid, I know it, but it allows my other aches and pains to stop hurting
enough for me to go to sleep.  It does not work on the really bad nights
when my nerves or spasms do not settle down though.  I may as well have not
even bothered.

Hugs, Barbara A in Auburn CA


-Original Message-
From: Janet Dunn 
To: 'transverse myelitis' 
Sent: Thu, Sep 9, 2010 7:59 am
Subject: [TMIC] Medications

Hello to all

I find it very interesting the number of us that are on or have taken
hydrocodone, especially when it is ³said² that opoids do not help with the
pain of TM

For me personally, I wouldn¹t make it if I didn¹t have a member or two of
the hydrocodone family in my drug repertoire.   I take 20mg  or 40mg of long
acting  HCL in the morning, depending on the legs, and have perocdan as a
filler for the day.  I also take Lyrica, Effexor, Wellbutrin and baclofen.
Even today, after 2 days of working 8 hours, and moving around and doing
housework, I hurt.  I want to lay in bed.  But . . . just like the rest of
us . . . duty and life are calling.

I really appreciate the medication information simply because I live so far
away from the nearest neurologist, and the wait time is up to a year, if we
can get in at all.  Then we must travel either 400 miles out of province, or
850 miles to Vancouver.  So the information on here is absolutely priceless.
However, you cannot have my MasterCard!  ;)

Janet

From: john snodgrass [mailto:]
Sent: September 8, 2010 2:09 PM
To: Rev. Craig Crossman
Cc: transverse myelitis
Subject: Re: [TMIC] Neurologist visit

I have been taking gabapentin 400mg  for the last 2 years 3 times a day.
some people say that they can take 1 and it knocks them out. i have never
experienced that. perhaps because of the extreem pain.
I also take hydrocodone,baclofen, and lorazepam.
   




=

Re: [TMIC] Medications

2010-09-10 Thread Janice Nichols

Re: [TMIC] MedicationsNot to my knowledge.But, if it works on the spasms, 
that is part of your problem taken care of.
Did you have seizures before TM?
Janice

From: Dalton Garis 
Sent: Friday, September 10, 2010 12:22 PM
To: Janice Nichols ; j.d...@shaw.ca ; tmic-list@eskimo.com ; Barbara Alma 
Subject: Re: [TMIC] Medications

Does it work for seizures??

Dalton

From: Janice Nichols 
Date: Fri, 10 Sep 2010 10:20:03 -0500
To: Dalton Garis , , 
, Barbara Alma 
Subject: Re: [TMIC] Medications

Remember you can work up to the amount you need.   If you start with the 
zomby-business, cut back and see if that will work for you.Or, just take it
a little before bedtime.   That is what I do.
Janice

From: Dalton Garis <mailto:malugss...@gmail.com>  
Sent: Friday, September 10, 2010 5:31 AM
To: Janice Nichols <mailto:jan...@centurytel.net>  ; j.d...@shaw.ca ; 
tmic-list@eskimo.com ; Barbara Alma <mailto:balmat...@aol.com>  
Subject: Re: [TMIC] Medications

OK;

I'll suggest it to my neuro.  He has been steering me away from the heavy-duty 
meds because I already take 40 mg of Prozac (have for 20 years) and he is 
afraid it will zomby-ize me.

Dalton

From: Janice Nichols 
Date: Thu, 9 Sep 2010 22:22:34 -0500
To: , , Barbara Alma 
Subject: Re: [TMIC] Medications
Resent-From: 
Resent-Date: Thu, 9 Sep 2010 20:22:23 -0700

There's that word again  -  spasms.I swear by baclofen.Had to change 
the number taken and the times of the day when to take them, but once that
was figured out, I could sleep.Sorry to sound like a broken record and I 
realize that we are all different too.Sure wish it would work on you guys 
the
way it works for me.
Janice

From: Barbara Alma <mailto:balmat...@aol.com>  
Sent: Thursday, September 09, 2010 10:16 PM
To: j.d...@shaw.ca ; tmic-list@eskimo.com 
Subject: Re: [TMIC] Medications

Hydrocodone: I personally do not get any relief from my nerve pain, 
burning/freezing or hyper sensitivity.  I take it for other pain, and I also 
take it to sleep occassionally.  Before anyone states that it isn't a sleep 
aid, I know it, but it allows my other aches and pains to stop hurting enough 
for me to go to sleep.  It does not work on the really bad nights when my 
nerves or spasms do not settle down though.  I may as well have not even 
bothered.

Hugs, Barbara A in Auburn CA

-Original Message-
From: Janet Dunn 
To: 'transverse myelitis' 
Sent: Thu, Sep 9, 2010 7:59 am
Subject: [TMIC] Medications

Hello to all

I find it very interesting the number of us that are on or have taken 
hydrocodone, especially when it is "said" that opoids do not help with the pain 
of TM

For me personally, I wouldn't make it if I didn't have a member or two of the 
hydrocodone family in my drug repertoire.   I take 20mg  or 40mg of long acting 
 HCL in the morning, depending on the legs, and have perocdan as a filler for 
the day.  I also take Lyrica, Effexor, Wellbutrin and baclofen.Even today, 
after 2 days of working 8 hours, and moving around and doing housework, I hurt. 
 I want to lay in bed.  But . . . just like the rest of us . . . duty and life 
are calling.

I really appreciate the medication information simply because I live so far 
away from the nearest neurologist, and the wait time is up to a year, if we can 
get in at all.  Then we must travel either 400 miles out of province, or 850 
miles to Vancouver.  So the information on here is absolutely priceless.  
However, you cannot have my MasterCard!  ;)

Janet

From: john snodgrass [mailto:] 
Sent: September 8, 2010 2:09 PM
To: Rev. Craig Crossman
Cc: transverse myelitis
Subject: Re: [TMIC] Neurologist visit

I have been taking gabapentin 400mg  for the last 2 years 3 times a day. some 
people say that they can take 1 and it knocks them out. i have never 
experienced that. perhaps because of the extreem pain.
I also take hydrocodone,baclofen, and lorazepam.

=

Re: [TMIC] Medications

2010-09-10 Thread john snodgrass

perhaps i should talk to the HR person where I work and see what can be done?

- Original Message 
From: Roger & Terese Pratt 
To: john snodgrass 
Sent: Thu, September 9, 2010 10:15:57 PM
Subject: Re: [TMIC] Medications

John,  I am on disability and collect both from my employer's disability 
program 
and from Social Security Disability.  It adds up to about 60% of what I was 
making.  It wouldn't hurt to talk to someone and find out.  I've been on 
disability for about 16 years.  My wife works, which helps alot.

- Roger in Kennewick, WA

- Original Message -
From: "john snodgrass" 
To: "Janice Nichols" 
Cc: "transverse myelitis" 
Sent: Thursday, September 9, 2010 1:40:47 PM
Subject: Re: [TMIC] Medications

I am going to fight this thing as long as i can without stoping working. 
if i go on disability i will get @ 1400 a month if i am lucky. 

thats opposed to the @3000 i get working. 

still paying for my home. 

From: Janice Nichols  
To: john snodgrass ; Janet Dunn  
Cc: transverse myelitis  
Sent: Thu, September 9, 2010 4:09:59 PM 
Subject: Re: [TMIC] Medications 

I have stopped going to my neuro.   If there is a change, or something I don't 
understand, I will go back. He just did not have anything new for me - 
either 

meds or advice. My meds now come from my family doctor - who was right with 
me all the 9 weeks in the hospital calling in specialists for each problem 

that developed.   Also, my other  meds come from my Pain Management Doc who has 
been very helpful.    At this point, I really don't need a neuro. 

John, why not disability? You are in pain quite a bit.   I don't know how 
old you are, but I could understand doing it. 

Janice 

From: john snodgrass 
Sent: Thursday, September 09, 2010 2:57 PM 
To: Janet Dunn 
Cc: transverse myelitis 
Subject: Re: [TMIC] Medications 

it really bothers me to hear of these instances of people not getting to the Dr 
or having to travel vast distances and wait times when I can go to my family Dr 
on a whim and my neurologist works at the same place as my sister-n-law and is 
always asking about me and making sure i have appointments every 3 months. 

however,,going to the Dr doesnt make me any better than i would be if i 
didnt go at all now. 

I just get my scripts on time and they watch for other things i reckon. 
(depression talking) 

as for working,my boss and superintendant allow me to work but keep suggesting 
that i go on disability. 

so does my Dr's. 
one of my Dr's is a senator in this state and told me today that should i ever 
not be able to go on that he would go to bat for me. 

thought that was interesting. 

I still dont understand why a dr is a senator or why is a senator is a Dr. 

His name is Ron D Stollings 

as for hydrocodonei read on one of the med-sites that if you take 2 tylenol 
with the hydrocodone that it will do better than either one of them by 
themselves.So I did,and it does. 

then you have the extended use of acetaminophen effect that might eat your 
liver 
or something. 

Pill time,,,bye bye. 

From: Janet Dunn  
To: transverse myelitis  
Sent: Thu, September 9, 2010 10:59:59 AM 
Subject: [TMIC] Medications 

Hello to all 

I find it very interesting the number of us that are on or have taken 
hydrocodone, especially when it is “said” that opoids do not help with the pain 
of TM 

For me personally, I wouldn’t make it if I didn’t have a member or two of the 
hydrocodone family in my drug repertoire.   I take 20mg  or 40mg of long acting 
 HCL in the morning, depending on the legs, and have perocdan as a filler for 
the day.  I also take Lyrica, Effexor, Wellbutrin and baclofen.    Even today, 
after 2 days of working 8 hours, and moving around and doing housework, I 
hurt.  
I want to lay in bed.  But . . . just like the rest of us . . . duty and life 
are calling. 

I really appreciate the medication information simply because I live so far 
away 
from the nearest neurologist, and the wait time is up to a year, if we can get 
in at all.  Then we must travel either 400 miles out of province, or 850 miles 
to Vancouver.  So the information on here is absolutely priceless.  However, 
you 
cannot have my MasterCard!  ;) 

Janet 

From: john snodgrass [mailto:] 
Sent: September 8, 2010 2:09 PM 
To: Rev. Craig Crossman 
Cc: transverse myelitis 
Subject: Re: [TMIC] Neurologist visit 

I have been taking gabapentin 400mg  for the last 2 years 3 times a day. some 
people say that they can take 1 and it knocks them out. i have never 
experienced 
that. perhaps because of the extreem pain. 

I also take hydrocodone,baclofen, and lorazepam.

Re: [TMIC] Medications

2010-09-10 Thread john snodgrass

Roger,
 here is what kicks my butt.
i was training another driver about how to do what he needs to do in order to 
do 
the do that we do.
got me?

well he came to work with a cold as many do,i mean,who misses work because of a 
common cold?
well we shared the same truck. took turns driving. he coughed and sneezed. so 
as 
expected I caught the nasty cold.my cold turned into inner ear infection,that 
infection/virus went to my spine.

thats how i was blessed with TM.
the company that takes care of compensation for where i work said i couldnt 
file 
a comp claim on that because i could have gotten it from a bug bite as some 
have 
that were in iraq?

well here recently the superintendant where i work was asked by wells fargo,the 
comp company, why i had missed 180 days in 2008,he told them that i missed 16 
days and he said they had me listed as an occupational injury.

now dont that sound compensatable to you?

i still may get a lawyer and take them to the mat for all the crap i have 
suffered physically and mentally over this wonderful neurological disorder we 
share.

your thoughts?

my meds talk a lot during this time of day.
disgruntled John.



- Original Message 
From: Roger & Terese Pratt 
To: john snodgrass 
Sent: Thu, September 9, 2010 10:15:57 PM
Subject: Re: [TMIC] Medications

John,  I am on disability and collect both from my employer's disability 
program 
and from Social Security Disability.  It adds up to about 60% of what I was 
making.  It wouldn't hurt to talk to someone and find out.  I've been on 
disability for about 16 years.  My wife works, which helps alot.

- Roger in Kennewick, WA

- Original Message -
From: "john snodgrass" 
To: "Janice Nichols" 
Cc: "transverse myelitis" 
Sent: Thursday, September 9, 2010 1:40:47 PM
Subject: Re: [TMIC] Medications



I am going to fight this thing as long as i can without stoping working. 
if i go on disability i will get @ 1400 a month if i am lucky. 
  
thats opposed to the @3000 i get working. 
  
still paying for my home. 




From: Janice Nichols  
To: john snodgrass ; Janet Dunn  
Cc: transverse myelitis  
Sent: Thu, September 9, 2010 4:09:59 PM 
Subject: Re: [TMIC] Medications 


I have stopped going to my neuro.   If there is a change, or something I don't 
understand, I will go back. He just did not have anything new for me - 
either 

meds or advice. My meds now come from my family doctor - who was right with 
me all the 9 weeks in the hospital calling in specialists for each problem 

that developed.   Also, my other  meds come from my Pain Management Doc who has 
been very helpful.    At this point, I really don't need a neuro. 

  
John, why not disability? You are in pain quite a bit.   I don't know how 
old you are, but I could understand doing it. 

Janice 




From: john snodgrass 
Sent: Thursday, September 09, 2010 2:57 PM 
To: Janet Dunn 
Cc: transverse myelitis 
Subject: Re: [TMIC] Medications 



it really bothers me to hear of these instances of people not getting to the Dr 
or having to travel vast distances and wait times when I can go to my family Dr 
on a whim and my neurologist works at the same place as my sister-n-law and is 
always asking about me and making sure i have appointments every 3 months. 

however,,going to the Dr doesnt make me any better than i would be if i 
didnt go at all now. 

I just get my scripts on time and they watch for other things i reckon. 
(depression talking) 
  
as for working,my boss and superintendant allow me to work but keep suggesting 
that i go on disability. 

so does my Dr's. 
one of my Dr's is a senator in this state and told me today that should i ever 
not be able to go on that he would go to bat for me. 

thought that was interesting. 
  
I still dont understand why a dr is a senator or why is a senator is a Dr. 
  
His name is Ron D Stollings 
  
as for hydrocodonei read on one of the med-sites that if you take 2 tylenol 
with the hydrocodone that it will do better than either one of them by 
themselves.So I did,and it does. 

  
then you have the extended use of acetaminophen effect that might eat your 
liver 
or something. 


Pill time,,,bye bye. 


From: Janet Dunn  
To: transverse myelitis  
Sent: Thu, September 9, 2010 10:59:59 AM 
Subject: [TMIC] Medications 




Hello to all 

  

I find it very interesting the number of us that are on or have taken 
hydrocodone, especially when it is “said” that opoids do not help with the pain 
of TM 


  

For me personally, I wouldn’t make it if I didn’t have a member or two of the 
hydrocodone family in my drug repertoire.   I take 20mg  or 40mg of long acting 
 HCL in the morning, depending on the legs, and have perocdan as a filler for 
the day.  I also take Lyrica, Effexor, Wellbutrin and baclofen.    Even today, 
after 2 days of working 8 hours, and moving around and doing housework, I 
hurt.  
I want to lay in

Re: [TMIC] Medications

2010-09-10 Thread frank

>
Doesn't help those of us who are not connected!




I drive 250 miles to Montreal, 250 miles back to Freeport,ME


I pay $640 every three months


Am I "connected"?? I think Not 11


F

Re: [TMIC] Medications

Does it work for seizures??

Dalton

From: Janice Nichols 
Date: Fri, 10 Sep 2010 10:20:03 -0500
To: Dalton Garis , ,
, Barbara Alma 
Subject: Re: [TMIC] Medications

Remember you can work up to the amount you need.   If you start with the
zomby-business, cut back and see if that will work for you.Or, just take
it
a little before bedtime.   That is what I do.
Janice

From: Dalton Garis <mailto:malugss...@gmail.com>
Sent: Friday, September 10, 2010 5:31 AM
To: Janice Nichols <mailto:jan...@centurytel.net>  ; j.d...@shaw.ca ;
tmic-list@eskimo.com ; Barbara Alma <mailto:balmat...@aol.com>
Subject: Re: [TMIC] Medications

OK;

I¹ll suggest it to my neuro.  He has been steering me away from the
heavy-duty meds because I already take 40 mg of Prozac (have for 20 years)
and he is afraid it will zomby-ize me.

Dalton

From: Janice Nichols 
Date: Thu, 9 Sep 2010 22:22:34 -0500
To: , , Barbara Alma

Subject: Re: [TMIC] Medications
Resent-From: 
Resent-Date: Thu, 9 Sep 2010 20:22:23 -0700

There's that word again  -  spasms.I swear by baclofen.Had to change
the number taken and the times of the day when to take them, but once that
was figured out, I could sleep.Sorry to sound like a broken record and I
realize that we are all different too.Sure wish it would work on you
guys the
way it works for me.
Janice

From: Barbara Alma <mailto:balmat...@aol.com>
Sent: Thursday, September 09, 2010 10:16 PM
To: j.d...@shaw.ca ; tmic-list@eskimo.com
Subject: Re: [TMIC] Medications

Hydrocodone: I personally do not get any relief from my nerve pain,
burning/freezing or hyper sensitivity.  I take it for other pain, and I also
take it to sleep occassionally.  Before anyone states that it isn't a sleep
aid, I know it, but it allows my other aches and pains to stop hurting
enough for me to go to sleep.  It does not work on the really bad nights
when my nerves or spasms do not settle down though.  I may as well have not
even bothered.

Hugs, Barbara A in Auburn CA

-Original Message-
From: Janet Dunn 
To: 'transverse myelitis' 
Sent: Thu, Sep 9, 2010 7:59 am
Subject: [TMIC] Medications

Hello to all

I find it very interesting the number of us that are on or have taken
hydrocodone, especially when it is ³said² that opoids do not help with the
pain of TM

For me personally, I wouldn¹t make it if I didn¹t have a member or two of
the hydrocodone family in my drug repertoire.   I take 20mg  or 40mg of long
acting  HCL in the morning, depending on the legs, and have perocdan as a
filler for the day.  I also take Lyrica, Effexor, Wellbutrin and baclofen.
Even today, after 2 days of working 8 hours, and moving around and doing
housework, I hurt.  I want to lay in bed.  But . . . just like the rest of
us . . . duty and life are calling.

I really appreciate the medication information simply because I live so far
away from the nearest neurologist, and the wait time is up to a year, if we
can get in at all.  Then we must travel either 400 miles out of province, or
850 miles to Vancouver.  So the information on here is absolutely priceless.
However, you cannot have my MasterCard!  ;)

Janet

From: john snodgrass [mailto:]
Sent: September 8, 2010 2:09 PM
To: Rev. Craig Crossman
Cc: transverse myelitis
Subject: Re: [TMIC] Neurologist visit

I have been taking gabapentin 400mg  for the last 2 years 3 times a day.
some people say that they can take 1 and it knocks them out. i have never
experienced that. perhaps because of the extreem pain.
I also take hydrocodone,baclofen, and lorazepam.

=

Re: [TMIC] Medications

2010-09-10 Thread Jan Hargrove

I applied when I was +/- 55 and when I finally got it, I was given the amount I 
would get at full retirement...and this was before tm, for another immune 
problem.
My 2¢  janh

From: Dalton Garis 
To: Barbara Alma ; jcs...@yahoo.com; tmic-list@eskimo.com
Sent: Fri, September 10, 2010 5:28:21 AM
Subject: Re: [TMIC] Medications

Since disability payments are based on SSA quarters reported;

Some of us, who only got good jobs later in life, will not get very much at all 
if we go on disability.

Dalton

From: Barbara Alma 
Date: Thu, 09 Sep 2010 23:05:51 -0400
To: , 
Subject: Re: [TMIC] Medications
Resent-From: 
Resent-Date: Thu, 9 Sep 2010 20:06:14 -0700

John,

If I could have continued working after TM I would have.  It does take a high 
hit on your finances when you stop working and go on disability.  It's great 
that it is there if need be, but in my mind, nothing beats working until you 
are 
ready to stop by choice.  The doctor may however, feel that it is taking a 
heavy 
toll on you, which if it is, then it is something to consider.
Hugs, Barbara A in Auburn CA

-Original Message-
From: john snodgrass 
To: Janice Nichols 
Cc: transverse myelitis 
Sent: Thu, Sep 9, 2010 1:40 pm
Subject: Re: [TMIC] Medications

I am going to fight this thing as long as i can without stoping working.
if i go on disability i will get @ 1400 a month if i am lucky.

thats opposed to the @3000 i get working.

still paying for my home.

From:Janice Nichols 
To: john snodgrass ; Janet Dunn 
Cc: transverse myelitis 
Sent: Thu, September 9, 2010 4:09:59 PM
Subject: Re: [TMIC] Medications

I have stopped going to my neuro.   If there is a change, or something I don't 
understand, I will go back. He just did not have anything new for me - 
either
meds or advice. My meds now come from my family doctor - who was right with 
me all the 9 weeks in the hospital calling in specialists for each problem
that developed.   Also, my other  meds come from my Pain Management Doc who has 
been very helpful.    At this point, I really don't need a neuro.

John, why not disability? You are in pain quite a bit.   I don't know how 
old you are, but I could understand doing it.
Janice

From: john snodgrass <mailto:jcs...@yahoo.com>  
Sent: Thursday, September 09, 2010 2:57 PM
To: Janet Dunn <mailto:j.d...@shaw.ca>  
Cc: transverse myelitis <mailto:tmic-list@eskimo.com>  
Subject: Re: [TMIC] Medications

it really bothers me to hear of these instances of people not getting to the Dr 
or having to travel vast distances and wait times when I can go to my family Dr 
on a whim and my neurologist works at the same place as my sister-n-law and is 
always asking about me and making sure i have appointments every 3 months.
however,,going to the Dr doesnt make me any better than i would be if i 
didnt go at all now.
I just get my scripts on time and they watch for other things i reckon.
(depression talking)

as for working,my boss and superintendant allow me to work but keep suggesting 
that i go on disability.
so does my Dr's.
one of my Dr's is a senator in this state and told me today that should i ever 
not be able to go on that he would go to bat for me.
thought that was interesting.

I still dont understand why a dr is a senator or why is a senator is a Dr.

His name is Ron D Stollings

as for hydrocodonei read on one of the med-sites that if you take 2 tylenol 
with the hydrocodone that it will do better than either one of them by 
themselves.So I did,and it does.

then you have the extended use of acetaminophen effect that might eat your 
liver 
or something.
Pill time,,,bye bye.

From:Janet Dunn 
To: transverse myelitis 
Sent: Thu, September 9, 2010 10:59:59 AM
Subject: [TMIC] Medications

Hello to all

I find it very interesting the number of us that are on or have taken 
hydrocodone, especially when it is “said” that opoids do not help with the pain 
of TM

For me personally, I wouldn’t make it if I didn’t have a member or two of the 
hydrocodone family in my drug repertoire.   I take 20mg  or 40mg of long acting 
 HCL in the morning, depending on the legs, and have perocdan as a filler for 
the day.  I also take Lyrica, Effexor, Wellbutrin and baclofen.    Even today, 
after 2 days of working 8 hours, and moving around and doing housework, I hurt. 
 I want to lay in bed.  But . . . just like the rest of us . . . duty and life 
are calling.

I really appreciate the medication information simply because I live so far 
away 
from the nearest neurologist, and the wait time is up to a year, if we can get 
in at all.  Then we must travel either 400 miles out of province, or 850 miles 
to Vancouver.  So the information on here is absolutely priceless.  However, 
you 
cannot have my MasterCard!  ;)

Janet

From: john snodgra

Re: [TMIC] Medications

2010-09-10 Thread Janice Nichols

Re: [TMIC] MedicationsRemember you can work up to the amount you need.   If you 
start with the zomby-business, cut back and see if that will work for you.
Or, just take it
a little before bedtime.   That is what I do.
Janice

From: Dalton Garis 
Sent: Friday, September 10, 2010 5:31 AM
To: Janice Nichols ; j.d...@shaw.ca ; tmic-list@eskimo.com ; Barbara Alma 
Subject: Re: [TMIC] Medications

OK;

I'll suggest it to my neuro.  He has been steering me away from the heavy-duty 
meds because I already take 40 mg of Prozac (have for 20 years) and he is 
afraid it will zomby-ize me.

Dalton

From: Janice Nichols 
Date: Thu, 9 Sep 2010 22:22:34 -0500
To: , , Barbara Alma 
Subject: Re: [TMIC] Medications
Resent-From: 
Resent-Date: Thu, 9 Sep 2010 20:22:23 -0700

There's that word again  -  spasms.I swear by baclofen.Had to change 
the number taken and the times of the day when to take them, but once that
was figured out, I could sleep.Sorry to sound like a broken record and I 
realize that we are all different too.Sure wish it would work on you guys 
the
way it works for me.
Janice

From: Barbara Alma <mailto:balmat...@aol.com>  
Sent: Thursday, September 09, 2010 10:16 PM
To: j.d...@shaw.ca ; tmic-list@eskimo.com 
Subject: Re: [TMIC] Medications

Hydrocodone: I personally do not get any relief from my nerve pain, 
burning/freezing or hyper sensitivity.  I take it for other pain, and I also 
take it to sleep occassionally.  Before anyone states that it isn't a sleep 
aid, I know it, but it allows my other aches and pains to stop hurting enough 
for me to go to sleep.  It does not work on the really bad nights when my 
nerves or spasms do not settle down though.  I may as well have not even 
bothered.

Hugs, Barbara A in Auburn CA

-Original Message-
From: Janet Dunn 
To: 'transverse myelitis' 
Sent: Thu, Sep 9, 2010 7:59 am
Subject: [TMIC] Medications

Hello to all

I find it very interesting the number of us that are on or have taken 
hydrocodone, especially when it is "said" that opoids do not help with the pain 
of TM

For me personally, I wouldn't make it if I didn't have a member or two of the 
hydrocodone family in my drug repertoire.   I take 20mg  or 40mg of long acting 
 HCL in the morning, depending on the legs, and have perocdan as a filler for 
the day.  I also take Lyrica, Effexor, Wellbutrin and baclofen.Even today, 
after 2 days of working 8 hours, and moving around and doing housework, I hurt. 
 I want to lay in bed.  But . . . just like the rest of us . . . duty and life 
are calling.

I really appreciate the medication information simply because I live so far 
away from the nearest neurologist, and the wait time is up to a year, if we can 
get in at all.  Then we must travel either 400 miles out of province, or 850 
miles to Vancouver.  So the information on here is absolutely priceless.  
However, you cannot have my MasterCard!  ;)

Janet

From: john snodgrass [mailto:] 
Sent: September 8, 2010 2:09 PM
To: Rev. Craig Crossman
Cc: transverse myelitis
Subject: Re: [TMIC] Neurologist visit

I have been taking gabapentin 400mg  for the last 2 years 3 times a day. some 
people say that they can take 1 and it knocks them out. i have never 
experienced that. perhaps because of the extreem pain.
I also take hydrocodone,baclofen, and lorazepam.

=

Re: [TMIC] Medications

OK;

I¹ll suggest it to my neuro.  He has been steering me away from the
heavy-duty meds because I already take 40 mg of Prozac (have for 20 years)
and he is afraid it will zomby-ize me.

Dalton




From: Janice Nichols 
Date: Thu, 9 Sep 2010 22:22:34 -0500
To: , , Barbara Alma

Subject: Re: [TMIC] Medications
Resent-From: 
Resent-Date: Thu, 9 Sep 2010 20:22:23 -0700

There's that word again  -  spasms.I swear by baclofen.Had to change
the number taken and the times of the day when to take them, but once that
was figured out, I could sleep.Sorry to sound like a broken record and I
realize that we are all different too.Sure wish it would work on you
guys the
way it works for me.
Janice

 
From: Barbara Alma <mailto:balmat...@aol.com>
Sent: Thursday, September 09, 2010 10:16 PM
To: j.d...@shaw.ca ; tmic-list@eskimo.com
Subject: Re: [TMIC] Medications

Hydrocodone: I personally do not get any relief from my nerve pain,
burning/freezing or hyper sensitivity.  I take it for other pain, and I also
take it to sleep occassionally.  Before anyone states that it isn't a sleep
aid, I know it, but it allows my other aches and pains to stop hurting
enough for me to go to sleep.  It does not work on the really bad nights
when my nerves or spasms do not settle down though.  I may as well have not
even bothered.
 
Hugs, Barbara A in Auburn CA


-Original Message-
From: Janet Dunn 
To: 'transverse myelitis' 
Sent: Thu, Sep 9, 2010 7:59 am
Subject: [TMIC] Medications

Hello to all
 
I find it very interesting the number of us that are on or have taken
hydrocodone, especially when it is ³said² that opoids do not help with the
pain of TM
 
For me personally, I wouldn¹t make it if I didn¹t have a member or two of
the hydrocodone family in my drug repertoire.   I take 20mg  or 40mg of long
acting  HCL in the morning, depending on the legs, and have perocdan as a
filler for the day.  I also take Lyrica, Effexor, Wellbutrin and baclofen.
Even today, after 2 days of working 8 hours, and moving around and doing
housework, I hurt.  I want to lay in bed.  But . . . just like the rest of
us . . . duty and life are calling.
 
I really appreciate the medication information simply because I live so far
away from the nearest neurologist, and the wait time is up to a year, if we
can get in at all.  Then we must travel either 400 miles out of province, or
850 miles to Vancouver.  So the information on here is absolutely priceless.
However, you cannot have my MasterCard!  ;)
 
Janet
 
From: john snodgrass [mailto:]
Sent: September 8, 2010 2:09 PM
To: Rev. Craig Crossman
Cc: transverse myelitis
Subject: Re: [TMIC] Neurologist visit
 
I have been taking gabapentin 400mg  for the last 2 years 3 times a day.
some people say that they can take 1 and it knocks them out. i have never
experienced that. perhaps because of the extreem pain.
I also take hydrocodone,baclofen, and lorazepam.
 



 
=

Re: [TMIC] Medications

Since disability payments are based on SSA quarters reported;

Some of us, who only got good jobs later in life, will not get very much at
all if we go on disability.

Dalton





From: Barbara Alma 
Date: Thu, 09 Sep 2010 23:05:51 -0400
To: , 
Subject: Re: [TMIC] Medications
Resent-From: 
Resent-Date: Thu, 9 Sep 2010 20:06:14 -0700

John,
 
If I could have continued working after TM I would have.  It does take a
high hit on your finances when you stop working and go on disability.  It's
great that it is there if need be, but in my mind, nothing beats working
until you are ready to stop by choice.  The doctor may however, feel that it
is taking a heavy toll on you, which if it is, then it is something to
consider.
Hugs, Barbara A in Auburn CA


-Original Message-
From: john snodgrass 
To: Janice Nichols 
Cc: transverse myelitis 
Sent: Thu, Sep 9, 2010 1:40 pm
Subject: Re: [TMIC] Medications

I am going to fight this thing as long as i can without stoping working.
if i go on disability i will get @ 1400 a month if i am lucky.
 
thats opposed to the @3000 i get working.
 
still paying for my home.


From: Janice Nichols 
To: john snodgrass ; Janet Dunn 
Cc: transverse myelitis 
Sent: Thu, September 9, 2010 4:09:59 PM
Subject: Re: [TMIC] Medications

I have stopped going to my neuro.   If there is a change, or something I
don't understand, I will go back. He just did not have anything new for
me - either
meds or advice. My meds now come from my family doctor - who was right
with me all the 9 weeks in the hospital calling in specialists for each
problem
that developed.   Also, my other  meds come from my Pain Management Doc who
has been very helpful.At this point, I really don't need a neuro.
 
John, why not disability? You are in pain quite a bit.   I don't know
how old you are, but I could understand doing it.
Janice

From: john snodgrass <mailto:jcs...@yahoo.com>
Sent: Thursday, September 09, 2010 2:57 PM
To: Janet Dunn <mailto:j.d...@shaw.ca>
Cc: transverse myelitis <mailto:tmic-list@eskimo.com>
Subject: Re: [TMIC] Medications

it really bothers me to hear of these instances of people not getting to the
Dr or having to travel vast distances and wait times when I can go to my
family Dr on a whim and my neurologist works at the same place as my
sister-n-law and is always asking about me and making sure i have
appointments every 3 months.
however,,going to the Dr doesnt make me any better than i would be if i
didnt go at all now.
I just get my scripts on time and they watch for other things i reckon.
(depression talking)
 
as for working,my boss and superintendant allow me to work but keep
suggesting that i go on disability.
so does my Dr's.
one of my Dr's is a senator in this state and told me today that should i
ever not be able to go on that he would go to bat for me.
thought that was interesting.
 
I still dont understand why a dr is a senator or why is a senator is a
Dr.
 
His name is Ron D Stollings
 
as for hydrocodonei read on one of the med-sites that if you take 2
tylenol with the hydrocodone that it will do better than either one of them
by themselves.So I did,and it does.
 
then you have the extended use of acetaminophen effect that might eat your
liver or something.
Pill time,,,bye bye.

From: Janet Dunn 
To: transverse myelitis 
Sent: Thu, September 9, 2010 10:59:59 AM
Subject: [TMIC] Medications

Hello to all
 
I find it very interesting the number of us that are on or have taken
hydrocodone, especially when it is ³said² that opoids do not help with the
pain of TM
 
For me personally, I wouldn¹t make it if I didn¹t have a member or two of
the hydrocodone family in my drug repertoire.   I take 20mg  or 40mg of long
acting  HCL in the morning, depending on the legs, and have perocdan as a
filler for the day.  I also take Lyrica, Effexor, Wellbutrin and baclofen.
Even today, after 2 days of working 8 hours, and moving around and doing
housework, I hurt.  I want to lay in bed.  But . . . just like the rest of
us . . . duty and life are calling.
 
I really appreciate the medication information simply because I live so far
away from the nearest neurologist, and the wait time is up to a year, if we
can get in at all.  Then we must travel either 400 miles out of province, or
850 miles to Vancouver.  So the information on here is absolutely priceless.
However, you cannot have my MasterCard!  ;)
 
Janet
 
From: john snodgrass [mailto:]
Sent: September 8, 2010 2:09 PM
To: Rev. Craig Crossman
Cc: transverse myelitis
Subject: Re: [TMIC] Neurologist visit
 
I have been taking gabapentin 400mg  for the last 2 years 3 times a day.
some people say that they can take 1 and it knocks them out. i have never
experienced that. perhaps because of the extreem pain.
I also take hydrocodone,baclofen, and lorazepam.

Re: [TMIC] Medications

That does happen to me every once in a while, but not often.
Janice

From: Barbara Alma 
Sent: Thursday, September 09, 2010 10:30 PM
To: jan...@centurytel.net ; j.d...@shaw.ca ; tmic-list@eskimo.com 
Subject: Re: [TMIC] Medications

I take baclofen as well, but if I've had a pretty busy day, it's not always 
dependable for me.  It just may be a longer night than usual.

Hugs, Barbara A in Auburn CA

-Original Message-
From: Janice Nichols 
To: j.d...@shaw.ca; tmic-list@eskimo.com; Barbara Alma 
Sent: Thu, Sep 9, 2010 8:22 pm
Subject: Re: [TMIC] Medications

There's that word again  -  spasms.I swear by baclofen.Had to change 
the number taken and the times of the day when to take them, but once that
was figured out, I could sleep.Sorry to sound like a broken record and I 
realize that we are all different too.Sure wish it would work on you guys 
the
way it works for me.
Janice

From: Barbara Alma 
Sent: Thursday, September 09, 2010 10:16 PM
To: j.d...@shaw.ca ; tmic-list@eskimo.com 
Subject: Re: [TMIC] Medications

Hydrocodone: I personally do not get any relief from my nerve pain, 
burning/freezing or hyper sensitivity.  I take it for other pain, and I also 
take it to sleep occassionally.  Before anyone states that it isn't a sleep 
aid, I know it, but it allows my other aches and pains to stop hurting enough 
for me to go to sleep.  It does not work on the really bad nights when my 
nerves or spasms do not settle down though.  I may as well have not even 
bothered.

Hugs, Barbara A in Auburn CA

-Original Message-
From: Janet Dunn 
To: 'transverse myelitis' 
Sent: Thu, Sep 9, 2010 7:59 am
Subject: [TMIC] Medications

Hello to all

I find it very interesting the number of us that are on or have taken 
hydrocodone, especially when it is “said” that opoids do not help with the pain 
of TM

For me personally, I wouldn’t make it if I didn’t have a member or two of the 
hydrocodone family in my drug repertoire.   I take 20mg  or 40mg of long acting 
 HCL in the morning, depending on the legs, and have perocdan as a filler for 
the day.  I also take Lyrica, Effexor, Wellbutrin and baclofen.Even today, 
after 2 days of working 8 hours, and moving around and doing housework, I hurt. 
 I want to lay in bed.  But . . . just like the rest of us . . . duty and life 
are calling.

I really appreciate the medication information simply because I live so far 
away from the nearest neurologist, and the wait time is up to a year, if we can 
get in at all.  Then we must travel either 400 miles out of province, or 850 
miles to Vancouver.  So the information on here is absolutely priceless.  
However, you cannot have my MasterCard!  ;)

Janet

From: john snodgrass [mailto:] 
Sent: September 8, 2010 2:09 PM
To: Rev. Craig Crossman
Cc: transverse myelitis
Subject: Re: [TMIC] Neurologist visit

I have been taking gabapentin 400mg  for the last 2 years 3 times a day. some 
people say that they can take 1 and it knocks them out. i have never 
experienced that. perhaps because of the extreem pain.
I also take hydrocodone,baclofen, and lorazepam.

=

Re: [TMIC] Medications

2010-09-09 Thread Barbara Alma

I take baclofen as well, but if I've had a pretty busy day, it's not always 
dependable for me.  It just may be a longer night than usual.


Hugs, Barbara A in Auburn CA



-Original Message-
From: Janice Nichols 
To: j.d...@shaw.ca; tmic-list@eskimo.com; Barbara Alma 
Sent: Thu, Sep 9, 2010 8:22 pm
Subject: Re: [TMIC] Medications


There's that word again  -  spasms.I swear by baclofen.Had to change 
the number taken and the times of the day when to take them, but once that
was figured out, I could sleep.Sorry to sound like a broken record and I 
realize that we are all different too.Sure wish it would work on you guys 
the
way it works for me.
Janice

 

From: Barbara Alma 
Sent: Thursday, September 09, 2010 10:16 PM
To: j.d...@shaw.ca ; tmic-list@eskimo.com 
Subject: Re: [TMIC] Medications



Hydrocodone: I personally do not get any relief from my nerve pain, 
burning/freezing or hyper sensitivity.  I take it for other pain, and I also 
take it to sleep occassionally.  Before anyone states that it isn't a sleep 
aid, I know it, but it allows my other aches and pains to stop hurting enough 
for me to go to sleep.  It does not work on the really bad nights when my 
nerves or spasms do not settle down though.  I may as well have not even 
bothered.
 
Hugs, Barbara A in Auburn CA



-Original Message-
From: Janet Dunn 
To: 'transverse myelitis' 
Sent: Thu, Sep 9, 2010 7:59 am
Subject: [TMIC] Medications



Hello to all
 
I find it very interesting the number of us that are on or have taken 
hydrocodone, especially when it is “said” that opoids do not help with the pain 
of TM
 
For me personally, I wouldn’t make it if I didn’t have a member or two of the 
hydrocodone family in my drug repertoire.   I take 20mg  or 40mg of long acting 
 HCL in the morning, depending on the legs, and have perocdan as a filler for 
the day.  I also take Lyrica, Effexor, Wellbutrin and baclofen.Even today, 
after 2 days of working 8 hours, and moving around and doing housework, I hurt. 
 I want to lay in bed.  But . . . just like the rest of us . . . duty and life 
are calling.
 
I really appreciate the medication information simply because I live so far 
away from the nearest neurologist, and the wait time is up to a year, if we can 
get in at all.  Then we must travel either 400 miles out of province, or 850 
miles to Vancouver.  So the information on here is absolutely priceless.  
However, you cannot have my MasterCard!  ;)
 
Janet
 

From: john snodgrass [mailto:] 
Sent: September 8, 2010 2:09 PM
To: Rev. Craig Crossman
Cc: transverse myelitis
Subject: Re: [TMIC] Neurologist visit

 

I have been taking gabapentin 400mg  for the last 2 years 3 times a day. some 
people say that they can take 1 and it knocks them out. i have never 
experienced that. perhaps because of the extreem pain.

I also take hydrocodone,baclofen, and lorazepam.

 







 

=

Re: [TMIC] Medications

There's that word again  -  spasms.I swear by baclofen.Had to change 
the number taken and the times of the day when to take them, but once that
was figured out, I could sleep.Sorry to sound like a broken record and I 
realize that we are all different too.Sure wish it would work on you guys 
the
way it works for me.
Janice

 
From: Barbara Alma 
Sent: Thursday, September 09, 2010 10:16 PM
To: j.d...@shaw.ca ; tmic-list@eskimo.com 
Subject: Re: [TMIC] Medications


Hydrocodone: I personally do not get any relief from my nerve pain, 
burning/freezing or hyper sensitivity.  I take it for other pain, and I also 
take it to sleep occassionally.  Before anyone states that it isn't a sleep 
aid, I know it, but it allows my other aches and pains to stop hurting enough 
for me to go to sleep.  It does not work on the really bad nights when my 
nerves or spasms do not settle down though.  I may as well have not even 
bothered.

Hugs, Barbara A in Auburn CA



-Original Message-
From: Janet Dunn 
To: 'transverse myelitis' 
Sent: Thu, Sep 9, 2010 7:59 am
Subject: [TMIC] Medications


Hello to all

I find it very interesting the number of us that are on or have taken 
hydrocodone, especially when it is “said” that opoids do not help with the pain 
of TM

For me personally, I wouldn’t make it if I didn’t have a member or two of the 
hydrocodone family in my drug repertoire.   I take 20mg  or 40mg of long acting 
 HCL in the morning, depending on the legs, and have perocdan as a filler for 
the day.  I also take Lyrica, Effexor, Wellbutrin and baclofen.Even today, 
after 2 days of working 8 hours, and moving around and doing housework, I hurt. 
 I want to lay in bed.  But . . . just like the rest of us . . . duty and life 
are calling.

I really appreciate the medication information simply because I live so far 
away from the nearest neurologist, and the wait time is up to a year, if we can 
get in at all.  Then we must travel either 400 miles out of province, or 850 
miles to Vancouver.  So the information on here is absolutely priceless.  
However, you cannot have my MasterCard!  ;)

Janet

From: john snodgrass [mailto:] 
Sent: September 8, 2010 2:09 PM
To: Rev. Craig Crossman
Cc: transverse myelitis
Subject: Re: [TMIC] Neurologist visit

I have been taking gabapentin 400mg  for the last 2 years 3 times a day. some 
people say that they can take 1 and it knocks them out. i have never 
experienced that. perhaps because of the extreem pain.
I also take hydrocodone,baclofen, and lorazepam.








=

Re: [TMIC] Medications

2010-09-09 Thread Barbara Alma


Hydrocodone: I personally do not get any relief from my nerve pain, 
burning/freezing or hyper sensitivity.  I take it for other pain, and I also 
take it to sleep occassionally.  Before anyone states that it isn't a sleep 
aid, I know it, but it allows my other aches and pains to stop hurting enough 
for me to go to sleep.  It does not work on the really bad nights when my 
nerves or spasms do not settle down though.  I may as well have not even 
bothered.

Hugs, Barbara A in Auburn CA



-Original Message-
From: Janet Dunn 
To: 'transverse myelitis' 
Sent: Thu, Sep 9, 2010 7:59 am
Subject: [TMIC] Medications



Hello to all
 
I find it very interesting the number of us that are on or have taken 
hydrocodone, especially when it is “said” that opoids do not help with the pain 
of TM
 
For me personally, I wouldn’t make it if I didn’t have a member or two of the 
hydrocodone family in my drug repertoire.   I take 20mg  or 40mg of long acting 
 HCL in the morning, depending on the legs, and have perocdan as a filler for 
the day.  I also take Lyrica, Effexor, Wellbutrin and baclofen.Even today, 
after 2 days of working 8 hours, and moving around and doing housework, I hurt. 
 I want to lay in bed.  But . . . just like the rest of us . . . duty and life 
are calling.
 
I really appreciate the medication information simply because I live so far 
away from the nearest neurologist, and the wait time is up to a year, if we can 
get in at all.  Then we must travel either 400 miles out of province, or 850 
miles to Vancouver.  So the information on here is absolutely priceless.  
However, you cannot have my MasterCard!  ;)
 
Janet
 

From: john snodgrass [mailto:] 
Sent: September 8, 2010 2:09 PM
To: Rev. Craig Crossman
Cc: transverse myelitis
Subject: Re: [TMIC] Neurologist visit

 

I have been taking gabapentin 400mg  for the last 2 years 3 times a day. some 
people say that they can take 1 and it knocks them out. i have never 
experienced that. perhaps because of the extreem pain.

I also take hydrocodone,baclofen, and lorazepam.

Re: [TMIC] Medications

2010-09-09 Thread Barbara Alma


John,

If I could have continued working after TM I would have.  It does take a high 
hit on your finances when you stop working and go on disability.  It's great 
that it is there if need be, but in my mind, nothing beats working until you 
are ready to stop by choice.  The doctor may however, feel that it is taking a 
heavy toll on you, which if it is, then it is something to consider.

Hugs, Barbara A in Auburn CA



-Original Message-
From: john snodgrass 
To: Janice Nichols 
Cc: transverse myelitis 
Sent: Thu, Sep 9, 2010 1:40 pm
Subject: Re: [TMIC] Medications



I am going to fight this thing as long as i can without stoping working.
if i go on disability i will get @ 1400 a month if i am lucky.
 
thats opposed to the @3000 i get working.
 
still paying for my home.



From: Janice Nichols 
To: john snodgrass ; Janet Dunn 
Cc: transverse myelitis 
Sent: Thu, September 9, 2010 4:09:59 PM
Subject: Re: [TMIC] Medications


I have stopped going to my neuro.   If there is a change, or something I don't 
understand, I will go back. He just did not have anything new for me - 
either
meds or advice. My meds now come from my family doctor - who was right with 
me all the 9 weeks in the hospital calling in specialists for each problem
that developed.   Also, my other  meds come from my Pain Management Doc who has 
been very helpful.At this point, I really don't need a neuro.
 
John, why not disability? You are in pain quite a bit.   I don't know how 
old you are, but I could understand doing it.
Janice



From: john snodgrass 
Sent: Thursday, September 09, 2010 2:57 PM
To: Janet Dunn 
Cc: transverse myelitis 
Subject: Re: [TMIC] Medications




it really bothers me to hear of these instances of people not getting to the Dr 
or having to travel vast distances and wait times when I can go to my family Dr 
on a whim and my neurologist works at the same place as my sister-n-law and is 
always asking about me and making sure i have appointments every 3 months.
however,,going to the Dr doesnt make me any better than i would be if i 
didnt go at all now.
I just get my scripts on time and they watch for other things i reckon.
(depression talking)
 
as for working,my boss and superintendant allow me to work but keep suggesting 
that i go on disability.
so does my Dr's.
one of my Dr's is a senator in this state and told me today that should i ever 
not be able to go on that he would go to bat for me.
thought that was interesting.
 
I still dont understand why a dr is a senator or why is a senator is a Dr.
 
His name is Ron D Stollings
 
as for hydrocodonei read on one of the med-sites that if you take 2 tylenol 
with the hydrocodone that it will do better than either one of them by 
themselves.So I did,and it does.
 
then you have the extended use of acetaminophen effect that might eat your 
liver or something.

Pill time,,,bye bye.

From: Janet Dunn 
To: transverse myelitis 
Sent: Thu, September 9, 2010 10:59:59 AM
Subject: [TMIC] Medications


Hello to all
 
I find it very interesting the number of us that are on or have taken 
hydrocodone, especially when it is “said” that opoids do not help with the pain 
of TM
 
For me personally, I wouldn’t make it if I didn’t have a member or two of the 
hydrocodone family in my drug repertoire.   I take 20mg  or 40mg of long acting 
 HCL in the morning, depending on the legs, and have perocdan as a filler for 
the day.  I also take Lyrica, Effexor, Wellbutrin and baclofen.Even today, 
after 2 days of working 8 hours, and moving around and doing housework, I hurt. 
 I want to lay in bed.  But . . . just like the rest of us . . . duty and life 
are calling.
 
I really appreciate the medication information simply because I live so far 
away from the nearest neurologist, and the wait time is up to a year, if we can 
get in at all.  Then we must travel either 400 miles out of province, or 850 
miles to Vancouver.  So the information on here is absolutely priceless.  
However, you cannot have my MasterCard!  ;)
 
Janet
 

From: john snodgrass [mailto:] 
Sent: September 8, 2010 2:09 PM
To: Rev. Craig Crossman
Cc: transverse myelitis
Subject: Re: [TMIC] Neurologist visit

 

I have been taking gabapentin 400mg  for the last 2 years 3 times a day. some 
people say that they can take 1 and it knocks them out. i have never 
experienced that. perhaps because of the extreem pain.

I also take hydrocodone,baclofen, and lorazepam.

Re: [TMIC] Medications

I don't blame you.
Janice

From: john snodgrass 
Sent: Thursday, September 09, 2010 3:40 PM
To: Janice Nichols 
Cc: transverse myelitis 
Subject: Re: [TMIC] Medications

I am going to fight this thing as long as i can without stoping working.
if i go on disability i will get @ 1400 a month if i am lucky.

thats opposed to the @3000 i get working.

still paying for my home.

From: Janice Nichols 
To: john snodgrass ; Janet Dunn 
Cc: transverse myelitis 
Sent: Thu, September 9, 2010 4:09:59 PM
Subject: Re: [TMIC] Medications

I have stopped going to my neuro.   If there is a change, or something I don't 
understand, I will go back. He just did not have anything new for me - 
either
meds or advice. My meds now come from my family doctor - who was right with 
me all the 9 weeks in the hospital calling in specialists for each problem
that developed.   Also, my other  meds come from my Pain Management Doc who has 
been very helpful.At this point, I really don't need a neuro.

John, why not disability? You are in pain quite a bit.   I don't know how 
old you are, but I could understand doing it.
Janice

From: john snodgrass 
Sent: Thursday, September 09, 2010 2:57 PM
To: Janet Dunn 
Cc: transverse myelitis 
Subject: Re: [TMIC] Medications

it really bothers me to hear of these instances of people not getting to the Dr 
or having to travel vast distances and wait times when I can go to my family Dr 
on a whim and my neurologist works at the same place as my sister-n-law and is 
always asking about me and making sure i have appointments every 3 months.
however,,going to the Dr doesnt make me any better than i would be if i 
didnt go at all now.
I just get my scripts on time and they watch for other things i reckon.
(depression talking)

as for working,my boss and superintendant allow me to work but keep suggesting 
that i go on disability.
so does my Dr's.
one of my Dr's is a senator in this state and told me today that should i ever 
not be able to go on that he would go to bat for me.
thought that was interesting.

I still dont understand why a dr is a senator or why is a senator is a Dr.

His name is Ron D Stollings

as for hydrocodonei read on one of the med-sites that if you take 2 tylenol 
with the hydrocodone that it will do better than either one of them by 
themselves.So I did,and it does.

then you have the extended use of acetaminophen effect that might eat your 
liver or something.

Pill time,,,bye bye.

From: Janet Dunn 
To: transverse myelitis 
Sent: Thu, September 9, 2010 10:59:59 AM
Subject: [TMIC] Medications

Hello to all

I find it very interesting the number of us that are on or have taken 
hydrocodone, especially when it is “said” that opoids do not help with the pain 
of TM

For me personally, I wouldn’t make it if I didn’t have a member or two of the 
hydrocodone family in my drug repertoire.   I take 20mg  or 40mg of long acting 
 HCL in the morning, depending on the legs, and have perocdan as a filler for 
the day.  I also take Lyrica, Effexor, Wellbutrin and baclofen.Even today, 
after 2 days of working 8 hours, and moving around and doing housework, I hurt. 
 I want to lay in bed.  But . . . just like the rest of us . . . duty and life 
are calling.

I really appreciate the medication information simply because I live so far 
away from the nearest neurologist, and the wait time is up to a year, if we can 
get in at all.  Then we must travel either 400 miles out of province, or 850 
miles to Vancouver.  So the information on here is absolutely priceless.  
However, you cannot have my MasterCard!  ;)

Janet

From: john snodgrass [mailto:] 
Sent: September 8, 2010 2:09 PM
To: Rev. Craig Crossman
Cc: transverse myelitis
Subject: Re: [TMIC] Neurologist visit

I have been taking gabapentin 400mg  for the last 2 years 3 times a day. some 
people say that they can take 1 and it knocks them out. i have never 
experienced that. perhaps because of the extreem pain.

I also take hydrocodone,baclofen, and lorazepam.

Re: [TMIC] Medications

2010-09-09 Thread john snodgrass

I am going to fight this thing as long as i can without stoping working.
if i go on disability i will get @ 1400 a month if i am lucky.

thats opposed to the @3000 i get working.

still paying for my home.





From: Janice Nichols 
To: john snodgrass ; Janet Dunn 
Cc: transverse myelitis 
Sent: Thu, September 9, 2010 4:09:59 PM
Subject: Re: [TMIC] Medications


I have stopped going to my neuro.   If there is a change, or something I don't 
understand, I will go back. He just did not have anything new for me - 
either
meds or advice. My meds now come from my family doctor - who was right with 
me all the 9 weeks in the hospital calling in specialists for each problem
that developed.   Also, my other  meds come from my Pain Management Doc who has 
been very helpful.    At this point, I really don't need a neuro.
 
John, why not disability? You are in pain quite a bit.   I don't know how 
old you are, but I could understand doing it.
Janice

From: john snodgrass 
Sent: Thursday, September 09, 2010 2:57 PM
To: Janet Dunn 
Cc: transverse myelitis 
Subject: Re: [TMIC] Medications

it really bothers me to hear of these instances of people not getting to the Dr 
or having to travel vast distances and wait times when I can go to my family Dr 
on a whim and my neurologist works at the same place as my sister-n-law and is 
always asking about me and making sure i have appointments every 3 months.
however,,going to the Dr doesnt make me any better than i would be if i 
didnt go at all now.
I just get my scripts on time and they watch for other things i reckon.
(depression talking)

as for working,my boss and superintendant allow me to work but keep suggesting 
that i go on disability.
so does my Dr's.
one of my Dr's is a senator in this state and told me today that should i ever 
not be able to go on that he would go to bat for me.
thought that was interesting.

I still dont understand why a dr is a senator or why is a senator is a Dr.

His name is Ron D Stollings

as for hydrocodonei read on one of the med-sites that if you take 2 tylenol 
with the hydrocodone that it will do better than either one of them by 
themselves.So I did,and it does.

then you have the extended use of acetaminophen effect that might eat your 
liver 
or something.

Pill time,,,bye bye.



From: Janet Dunn 
To: transverse myelitis 
Sent: Thu, September 9, 2010 10:59:59 AM
Subject: [TMIC] Medications


Hello to all
 
I find it very interesting the number of us that are on or have taken 
hydrocodone, especially when it is “said” that opoids do not help with the pain 
of TM
 
For me personally, I wouldn’t make it if I didn’t have a member or two of the 
hydrocodone family in my drug repertoire.   I take 20mg  or 40mg of long acting 
 HCL in the morning, depending on the legs, and have perocdan as a filler for 
the day.  I also take Lyrica, Effexor, Wellbutrin and baclofen.    Even today, 
after 2 days of working 8 hours, and moving around and doing housework, I 
hurt.  
I want to lay in bed.  But . . . just like the rest of us . . . duty and life 
are calling.
 
I really appreciate the medication information simply because I live so far 
away 
from the nearest neurologist, and the wait time is up to a year, if we can get 
in at all.  Then we must travel either 400 miles out of province, or 850 miles 
to Vancouver.  So the information on here is absolutely priceless.  However, 
you 
cannot have my MasterCard!  ;)
 
Janet
 
From:john snodgrass [mailto:] 
Sent: September 8, 2010 2:09 PM
To: Rev. Craig Crossman
Cc: transverse myelitis
Subject: Re: [TMIC] Neurologist visit
 
I have been taking gabapentin 400mg  for the last 2 years 3 times a day. some 
people say that they can take 1 and it knocks them out. i have never 
experienced 
that. perhaps because of the extreem pain.
I also take hydrocodone,baclofen, and lorazepam.

Re: [TMIC] Medications

2010-09-09 Thread frank



Janet,


If you have pain that medication can't handle, ask your M.D. for a prescription 
of Sativex, subungal spray, one spray as needed every 8 to 12 hours, 4 spray 
bottles per box, Disp. 0ne (1) box every 2 to 3 months. Sativex is a distillate 
of cannabinoids made in the U.K. and now paid for by Canadian Medicare. Not 
being Canadian, I still pay $640.00 per box- but it's worth it.


Take care


F

Re: [TMIC] Medications

I have stopped going to my neuro.   If there is a change, or something I don't 
understand, I will go back. He just did not have anything new for me - 
either
meds or advice. My meds now come from my family doctor - who was right with 
me all the 9 weeks in the hospital calling in specialists for each problem
that developed.   Also, my other  meds come from my Pain Management Doc who has 
been very helpful.At this point, I really don't need a neuro.

John, why not disability? You are in pain quite a bit.   I don't know how 
old you are, but I could understand doing it.
Janice


From: john snodgrass 
Sent: Thursday, September 09, 2010 2:57 PM
To: Janet Dunn 
Cc: transverse myelitis 
Subject: Re: [TMIC] Medications


it really bothers me to hear of these instances of people not getting to the Dr 
or having to travel vast distances and wait times when I can go to my family Dr 
on a whim and my neurologist works at the same place as my sister-n-law and is 
always asking about me and making sure i have appointments every 3 months.
however,,going to the Dr doesnt make me any better than i would be if i 
didnt go at all now.
I just get my scripts on time and they watch for other things i reckon.
(depression talking)

as for working,my boss and superintendant allow me to work but keep suggesting 
that i go on disability.
so does my Dr's.
one of my Dr's is a senator in this state and told me today that should i ever 
not be able to go on that he would go to bat for me.
thought that was interesting.

I still dont understand why a dr is a senator or why is a senator is a Dr.

His name is Ron D Stollings

as for hydrocodonei read on one of the med-sites that if you take 2 tylenol 
with the hydrocodone that it will do better than either one of them by 
themselves.So I did,and it does.

then you have the extended use of acetaminophen effect that might eat your 
liver or something.

Pill time,,,bye bye.



From: Janet Dunn 
To: transverse myelitis 
Sent: Thu, September 9, 2010 10:59:59 AM
Subject: [TMIC] Medications


Hello to all



I find it very interesting the number of us that are on or have taken 
hydrocodone, especially when it is “said” that opoids do not help with the pain 
of TM



For me personally, I wouldn’t make it if I didn’t have a member or two of the 
hydrocodone family in my drug repertoire.   I take 20mg  or 40mg of long acting 
 HCL in the morning, depending on the legs, and have perocdan as a filler for 
the day.  I also take Lyrica, Effexor, Wellbutrin and baclofen.Even today, 
after 2 days of working 8 hours, and moving around and doing housework, I hurt. 
 I want to lay in bed.  But . . . just like the rest of us . . . duty and life 
are calling.



I really appreciate the medication information simply because I live so far 
away from the nearest neurologist, and the wait time is up to a year, if we can 
get in at all.  Then we must travel either 400 miles out of province, or 850 
miles to Vancouver.  So the information on here is absolutely priceless.  
However, you cannot have my MasterCard!  ;)



Janet



From: john snodgrass [mailto:] 
Sent: September 8, 2010 2:09 PM
To: Rev. Craig Crossman
Cc: transverse myelitis
Subject: Re: [TMIC] Neurologist visit



I have been taking gabapentin 400mg  for the last 2 years 3 times a day. some 
people say that they can take 1 and it knocks them out. i have never 
experienced that. perhaps because of the extreem pain.

I also take hydrocodone,baclofen, and lorazepam.

Re: [TMIC] Medications

2010-09-09 Thread john snodgrass

it really bothers me to hear of these instances of people not getting to the Dr 
or having to travel vast distances and wait times when I can go to my family Dr 
on a whim and my neurologist works at the same place as my sister-n-law and is 
always asking about me and making sure i have appointments every 3 months.
however,,going to the Dr doesnt make me any better than i would be if i 
didnt go at all now.
I just get my scripts on time and they watch for other things i reckon.
(depression talking)

as for working,my boss and superintendant allow me to work but keep suggesting 
that i go on disability.
so does my Dr's.
one of my Dr's is a senator in this state and told me today that should i ever 
not be able to go on that he would go to bat for me.
thought that was interesting.

I still dont understand why a dr is a senator or why is a senator is a Dr.

His name is Ron D Stollings

as for hydrocodonei read on one of the med-sites that if you take 2 tylenol 
with the hydrocodone that it will do better than either one of them by 
themselves.So I did,and it does.

then you have the extended use of acetaminophen effect that might eat your 
liver 
or something.

Pill time,,,bye bye.



From: Janet Dunn 
To: transverse myelitis 
Sent: Thu, September 9, 2010 10:59:59 AM
Subject: [TMIC] Medications


Hello to all
 
I find it very interesting the number of us that are on or have taken 
hydrocodone, especially when it is “said” that opoids do not help with the pain 
of TM
 
For me personally, I wouldn’t make it if I didn’t have a member or two of the 
hydrocodone family in my drug repertoire.   I take 20mg  or 40mg of long acting 
 HCL in the morning, depending on the legs, and have perocdan as a filler for 
the day.  I also take Lyrica, Effexor, Wellbutrin and baclofen.    Even today, 
after 2 days of working 8 hours, and moving around and doing housework, I 
hurt.  
I want to lay in bed.  But . . . just like the rest of us . . . duty and life 
are calling.
 
I really appreciate the medication information simply because I live so far 
away 
from the nearest neurologist, and the wait time is up to a year, if we can get 
in at all.  Then we must travel either 400 miles out of province, or 850 miles 
to Vancouver.  So the information on here is absolutely priceless.  However, 
you 
cannot have my MasterCard!  ;)
 
Janet
 
From:john snodgrass [mailto:] 
Sent: September 8, 2010 2:09 PM
To: Rev. Craig Crossman
Cc: transverse myelitis
Subject: Re: [TMIC] Neurologist visit
 
I have been taking gabapentin 400mg  for the last 2 years 3 times a day. some 
people say that they can take 1 and it knocks them out. i have never 
experienced 
that. perhaps because of the extreem pain.
I also take hydrocodone,baclofen, and lorazepam.

Re: [TMIC] Medications

2009-07-27 Thread Janice

Bernie,
Am really glad you went with the baclofen pills.   I think you will really be 
helped.Keep us posted on progress.
Janice
  - Original Message - 
  From: Jan Hargrove 
  To: Janice ; lynne myers ; tmic ; Bernie (S&FS)Butcher 
  Sent: Monday, July 27, 2009 11:05 AM
  Subject: RE: [TMIC] Medications

Bernie,

I think you've made the best decision, at least you're thinking about 
the "possibilities"
that might happen down the road with the pump..I never wanted to 
try the pump just from the discussions on here in the last 13 years. Spasms are 
a nasty reality for many 
of us, but I think the lesser of the evils that you had with your 
recent 'experience'!

Of course, who knows what's right,I just think you're doing the best 
for yourself 'cause
your choice is the one I would make!!  ;)

Glad the pills are helping!

jan

--- On Mon, 7/27/09, Butcher, Bernie (S&FS) 
 wrote:

  Hi Jan - what I am going to do is try the baclofen pills again. I am 
going to work my way up & hopefully find a dose that helps me, I don't want to 
get the pump. First, it's surgery, to get the thing in (scary!), and, once it's 
in, & I'm having trouble, I'll be stuck with it. Since Friday, I'm taking 15mg, 
with no problems (and spasms are not too bad!). I'm going to stay at 15 for 
another week.

  BERNARD BUTCHER

--
  From: Jan Hargrove [mailto:jmh1...@sbcglobal.net] 
  Sent: Friday, July 24, 2009 12:25 PM
  To: Janice; lynne myers; tmic; Butcher, Bernie (S&FS)
  Subject: RE: [TMIC] Medications

Sorry about your rotten experience...guess you got your 
answer as to whether you want the implant?  Hope you're better soon!!  janh

--- On Fri, 7/24/09, Butcher, Bernie (S&FS) 
 wrote:

 I had my Baclofen trial on Wednesday, and I have to say it 
was not a pleasant experience. The spinal tap was quite painful, and after an 
hour, They had me walking with walker OK, but an hour later, I could hardly 
stand – after that, all I could do is stay in bed in the hospital. No spasms, 
but I did get leg cramps. They got me into the car at the end of the day like a 
190 lb, sack of potatoes. When I got home, my brother had to do the same, and 
also got me into bed. The next day, which they said I would b e back to normal, 
I wasn’t. I could stand & take a few steps, but on my way to the bathroom, my 
legs gave out & I fell. Today, Friday, I am back to normal, spasms & all.

 This whole ordeal has gotten me down on Baclofen and the 
pump idea.

  Bernie

--

  From: Janice [mailto:jan...@centurytel.net] 
          Sent: Monday, July 20, 2009 7:36 PM
  To: lynne myers; tmic
  Subject: Re: [TMIC] Medications

  Lynne,

  Mine were almost that bad at the beginning.   The baclofen 
really saved my sanity!

  Janice

- Original Message - 

From: lynne myers 

        To: tmic 

Sent: Monday, July 20, 2009 7:27 AM

Subject: Re: [TMIC] Medications

  My spasms are worse the lower in my body you go.  
Lower part of legs give me the most problems.  They used to be so  bad my 
husband would tell me it looked like I was trying to ride a bicycle.  A couple 
of times when I was laying on the sofa they actually flipped me off onto the 
floor.  Muscles in legs use to always be reall tight all the time too, so much 
so that when they would try to test my reflexes nothing moved.  Now things have 
gotten much better, I still have spasms off and on all day (worse when I have 
been overdoing it) but not nearly as severe when they occur.  Yes they have 
always been worse at night or when I try to lay down to relax.

  Lynne

      --- On Sun, 7/19/09, Janice  
wrote:

From: Janice 
Subject: Re: [TMIC] Medications
To: "lynne myers" , "tmic" 

Date: Sunday, July 19, 2009, 11:31 PM 

What are your spasms like? Are they mostly at 
nite? Also, is it located from bottom of feet to hip?Janice

  - Original Message - 

  From: lynne myers 

          To: Jan

RE: [TMIC] Medications

2009-07-27 Thread Jan Hargrove

Bernie,
 
I think you've made the best decision, at least you're thinking about the 
"possibilities"
that might happen down the road with the pump..I never wanted to try the 
pump just from the discussions on here in the last 13 years. Spasms are a nasty 
reality for many 
of us, but I think the lesser of the evils that you had with your recent 
'experience'!
 
Of course, who knows what's right,I just think you're doing the best for 
yourself 'cause
your choice is the one I would make!!  ;)

Glad the pills are helping!
 
jan
 

--- On Mon, 7/27/09, Butcher, Bernie (S&FS)  
wrote:
 


Hi Jan - what I am going to do is try the baclofen pills again. I am going to 
work my way up & hopefully find a dose that helps me, I don't want to get the 
pump. First, it's surgery, to get the thing in (scary!), and, once it's in, & 
I'm having trouble, I'll be stuck with it. Since Friday, I'm taking 15mg, with 
no problems (and spasms are not too bad!). I'm going to stay at 15 for another 
week.
 
BERNARD BUTCHER
 



From: Jan Hargrove [mailto:jmh1...@sbcglobal.net] 
Sent: Friday, July 24, 2009 12:25 PM
To: Janice; lynne myers; tmic; Butcher, Bernie (S&FS)
Subject: RE: [TMIC] Medications






Sorry about your rotten experience...guess you got your answer as to 
whether you want the implant?  Hope you're better soon!!  janh

--- On Fri, 7/24/09, Butcher, Bernie (S&FS)  
wrote:




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   I had my Baclofen trial on Wednesday, and I have to say it was not a 
pleasant experience. The spinal tap was quite painful, and after an hour, They 
had me walking with walker OK, but an hour later, I could hardly stand – after 
that, all I could do is stay in bed in the hospital. No spasms, but I did get 
leg cramps. They got me into the car at the end of the day like a 190 lb, sack 
of potatoes. When I got home, my brother had to do the same, and also got me 
into bed. The next day, which they said I would b e back to normal, I wasn’t. I 
could stand & take a few steps, but on my way to the bathroom, my legs gave out 
& I fell. Today, Friday, I am back to normal, spasms & all.
   This whole ordeal has gotten me down on Baclofen and the pump idea.    
  

  


Bernie





From: Janice [mailto:jan...@centurytel.net] 
Sent: Monday, July 20, 2009 7:36 PM
To: lynne myers; tmic
Subject: Re: [TMIC] Medications

  


Lynne,


Mine were almost that bad at the beginning.   The baclofen really saved my 
sanity!


Janice



- Original Message - 


From: lynne myers 


To: tmic 


Sent: Monday, July 20, 2009 7:27 AM


Subject: Re: [TMIC] Medications


 






My spasms are worse the lower in my body you go.  Lower part of legs give me 
the most problems.  They used to be so  bad my husband would tell me it looked 
like I was trying to ride a bicycle.  A couple of times when I was laying on 
the sofa they actually flipped me off onto the floor.  Muscles in legs use to 
always be reall tight all the time too, so much so that when they would try to 
test my reflexes nothing moved.  Now things have gotten much better, I still 
have spasms off and on all day (worse when I have been overdoing it) but not 
nearly as severe when they occur.  Yes they have always been worse at night or 
when I try to lay down to relax.


Lynne

--- On Sun, 7/19/09, Janice  wrote:



From: Janice 
Subject: Re: [TMIC] Medications
To: "lynne myers" , "tmic" 
Date: Sunday, July 19, 2009, 11:31 PM 


 

What are your spasms like? Are they mostly at nite? Also, is it located 
from bottom of feet to hip?    Janice



- Original Message - 


From: lynne myers 


To: Janice ; tmic 


Sent: Friday, July 17, 2009 6:51 AM


Subject: Re: [TMIC] Medications


 






The pump is for the spasms.  It works the same as oral Baclofen but uses much 
less medication to get the same results.


 


The actual pump is inserted just above and to the left side of my belly butt

RE: [TMIC] Medications

2009-07-27 Thread

Hi Jan - what I am going to do is try the baclofen pills again. I am going to 
work my way up & hopefully find a dose that helps me, I don't want to get the 
pump. First, it's surgery, to get the thing in (scary!), and, once it's in, & 
I'm having trouble, I'll be stuck with it. Since Friday, I'm taking 15mg, with 
no problems (and spasms are not too bad!). I'm going to stay at 15 for another 
week.
 
BERNARD BUTCHER
 



From: Jan Hargrove [mailto:jmh1...@sbcglobal.net] 
Sent: Friday, July 24, 2009 12:25 PM
To: Janice; lynne myers; tmic; Butcher, Bernie (S&FS)
Subject: RE: [TMIC] Medications


Sorry about your rotten experience...guess you got your answer as to 
whether you want the implant?  Hope you're better soon!!  janh

--- On Fri, 7/24/09, Butcher, Bernie (S&FS)  
wrote:



   I had my Baclofen trial on Wednesday, and I have to say it was not a 
pleasant experience. The spinal tap was quite painful, and after an hour, They 
had me walking with walker OK, but an hour later, I could hardly stand – after 
that, all I could do is stay in bed in the hospital. No spasms, but I did get 
leg cramps. They got me into the car at the end of the day like a 190 lb, sack 
of potatoes. When I got home, my brother had to do the same, and also got me 
into bed. The next day, which they said I would b e back to normal, I wasn’t. I 
could stand & take a few steps, but on my way to the bathroom, my legs gave out 
& I fell. Today, Friday, I am back to normal, spasms & all.

   This whole ordeal has gotten me down on Baclofen and the pump idea.  
  

  

  

Bernie





From: Janice [mailto:jan...@centurytel.net] 
Sent: Monday, July 20, 2009 7:36 PM
    To: lynne myers; tmic
Subject: Re: [TMIC] Medications

  

Lynne,

Mine were almost that bad at the beginning.   The baclofen really saved 
my sanity!

Janice

- Original Message - 

From: lynne myers 
<http://us.mc820.mail.yahoo.com/mc/compose?to=lynnemye...@yahoo.com>  

To: tmic 
<http://us.mc820.mail.yahoo.com/mc/compose?to=tmic-l...@eskimo.com>  

        Sent: Monday, July 20, 2009 7:27 AM

Subject: Re: [TMIC] Medications

 

My spasms are worse the lower in my body you go.  Lower part of legs give me 
the most problems.  They used to be so  bad my husband would tell me it looked 
like I was trying to ride a bicycle.  A couple of times when I was laying on 
the sofa they actually flipped me off onto the floor.  Muscles in legs use to 
always be reall tight all the time too, so much so that when they would try to 
test my reflexes nothing moved.  Now things have gotten much better, I still 
have spasms off and on all day (worse when I have been overdoing it) but not 
nearly as severe when they occur.  Yes they have always been worse at night or 
when I try to lay down to relax.

Lynne

--- On Sun, 7/19/09, Janice  wrote:


From: Janice 
Subject: Re: [TMIC] Medications
To: "lynne myers" , "tmic" 
Date: Sunday, July 19, 2009, 11:31 PM 

 

What are your spasms like? Are they mostly at nite? Also, is it 
located from bottom of feet to hip?Janice

- Original Message - 

From: lynne myers 
<http://us.mc534.mail.yahoo.com/mc/compose?to=lynnemye...@yahoo.com>  

To: Janice 
<http://us.mc534.mail.yahoo.com/mc/compose?to=jan...@centurytel.net>  ; tmic 
<http://us.mc534.mail.yahoo.com/mc/compose?to=tmic-l...@eskimo.com>  

Sent: Friday, July 17, 2009 6:51 AM

Subject: Re: [TMIC] Medications

 

The pump is for the spasms.  It works the same as oral Baclofen but uses much 
less medication to get the same results.

 

The actual pump is inserted just above and to the left side of my belly button. 
Then the tubing runs from there around my left side and into the lower part of 
my spinal column.  The pump is about 4" across and sticks out about an inch and 
a half.  Its not really noticable under looser fitting tops, but real noticable 
in the summer, especially in my bathing suit.  No more clingy fabrics for me 
lol.

 

Lynne 

--- On Thu, 7/16/09, Janice  wrote:


From: Janice 
Subject: Re: [TMIC] Medications
To: "lynne myers" , " Bernie (S&FS)Butcher" 
, "tmic" 
Date: Thursday, July 16, 2009, 11:45 PM 

 

Is the Baclofen pump you are using for pain or spasms, etc.?  Also, 
where is it inserted?   Janice

RE: [TMIC] Medications

2009-07-27 Thread

No, I didn't get hurt, I went down slowly on my walker. Then my neighbor came 
over & got me into my wheelchair.
 
BERNARD BUTCHER
 



From: Catherine [mailto:camoa...@yahoo.com] 
Sent: Friday, July 24, 2009 12:58 PM
To: Butcher, Bernie (S&FS); Transverse Mylitis Group
Subject: Re: [TMIC] Medications



Bernie,
 
I am sorry you had such an unfornutnate experience.  I hope you did not hurt 
yourself further when you fell.  Take care.
 
Catherine





From: "Butcher, Bernie (S&FS)" 
To: Janice ; lynne myers ; tmic 

Sent: Friday, July 24, 2009 9:15:23 AM
Subject: RE: [TMIC] Medications


   I had my Baclofen trial on Wednesday, and I have to say it was not a 
pleasant experience. The spinal tap was quite painful, and after an hour, They 
had me walking with walker OK, but an hour later, I could hardly stand – after 
that, all I could do is stay in bed in the hospital. No spasms, but I did get 
leg cramps. They got me into the car at the end of the day like a 190 lb, sack 
of potatoes. When I got home, my brother had to do the same, and also got me 
into bed. The next day, which they said I would b e back to normal, I wasn’t. I 
could stand & take a few steps, but on my way to the bathroom, my legs gave out 
& I fell. Today, Friday, I am back to normal, spasms & all.
   This whole ordeal has gotten me down on Baclofen and the pump idea.
 
 
Bernie



From:Janice [mailto:jan...@centurytel.net] 
Sent: Monday, July 20, 2009 7:36 PM
To: lynne myers; tmic
Subject: Re: [TMIC] Medications
 
Lynne,
Mine were almost that bad at the beginning.   The baclofen really saved my 
sanity!
Janice
- Original Message - 
>From:lynne myers 
>To:tmic 
>Sent:Monday, July 20, 2009 7:27 AM
>Subject:Re: [TMIC] Medications
> 
>My spasms are worse the lower in my body you go.  Lower part of legs give me 
>the most problems.  They used to be so  bad my husband would tell me it looked 
>like I was trying to ride a bicycle.  A couple of times when I was laying on 
>the sofa they actually flipped me off onto the floor.  Muscles in legs use to 
>always be reall tight all the time too, so much so that when they would try to 
>test my reflexes nothing moved.  Now things have gotten much better, I still 
>have spasms off and on all day (worse when I have been overdoing it) but not 
>nearly as severe when they occur.  Yes they have always been worse at night or 
>when I try to lay down to relax.
>Lynne
>
>--- On Sun, 7/19/09, Janice  wrote:
>
>>From: Janice 
>>Subject: Re: [TMIC] Medications
>>To: "lynne myers" , "tmic" 
>>Date: Sunday, July 19, 2009, 11:31 PM
>> 
>>What are your spasms like? Are they mostly at nite? Also, is it 
>>located from bottom of feet to hip?Janice
>>- Original Message - 
>>>From:lynne myers 
>>>To:Janice ; tmic 
>>>Sent:Friday, July 17, 2009 6:51 AM
>>>Subject:Re: [TMIC] Medications
>>> 
>>>The pump is for the spasms.  It works the same as oral Baclofen but uses 
>>>much less medication to get the same results.
>>> 
>>>The actual pump is inserted just above and to the left side of my belly 
>>>button. Then the tubing runs from there around my left side and into the 
>>>lower part of my spinal column.  The pump is about 4" across and sticks out 
>>>about an inch and a half.  Its not really noticable under looser fitting 
>>>tops, but real noticable in the summer, especially in my bathing suit.  No 
>>>more clingy fabrics for me lol.
>>> 
>>>Lynne 
>>>
>>>--- On Thu, 7/16/09, Janice  wrote:
>>>
>>>>From: Janice 
>>>>Subject: Re: [TMIC] Medications
>>>>To: "lynne myers" , " Bernie (S&FS)Butcher" 
>>>>, "tmic" 
>>>>Date: Thursday, July 16, 2009, 11:45 PM
>>>> 
>>>>Is the Baclofen pump you are using for pain or spasms, etc.?  Also, 
>>>>where is it inserted?   Janice
>>>>   
>

Re: [TMIC] Medications

2009-07-26 Thread jrushton

So sorry for you, Bernie, for having such a hard time.  Please keep us
updated on how you are doing??  Sincerely..Jeanne

---Original Message---

From: L T CHERPESKI
Date: 7/25/2009 9:08:32 PM
To: Janice;  lynne myers;  tmic;  Butcher, Bernie \(S&FS\)
Subject: Re: [TMIC] Medications

Hi Bernie, what an awful ordeal.  I'm so sorry you had such a bad experience
  Uh, falling is never a good thing.  Are you ok?
 Linda
- Original Message - 
From: Butcher, Bernie (S&FS) 
To: Janice ; lynne myers ; tmic 
Sent: Friday, July 24, 2009 7:15 AM
Subject: RE: [TMIC] Medications

   I had my Baclofen trial on Wednesday, and I have to say it was not a
pleasant experience. The spinal tap was quite painful, and after an hour,
They had me walking with walker OK, but an hour later, I could hardly stand
– after that, all I could do is stay in bed in the hospital. No spasms, but
I did get leg cramps. They got me into the car at the end of the day like a
190 lb, sack of potatoes. When I got home, my brother had to do the same,
and also got me into bed. The next day, which they said I would b e back to
normal, I wasn’t. I could stand & take a few steps, but on my way to the
bathroom, my legs gave out & I fell. Today, Friday, I am back to normal,
spasms & all.
   This whole ordeal has gotten me down on Baclofen and the pump idea.

Bernie

From: Janice [mailto:jan...@centurytel.net] 
Sent: Monday, July 20, 2009 7:36 PM
To: lynne myers; tmic
Subject: Re: [TMIC] Medications

Lynne,
Mine were almost that bad at the beginning.   The baclofen really saved my
sanity!
Janice
- Original Message - 
From: lynne myers 
To: tmic 
Sent: Monday, July 20, 2009 7:27 AM
Subject: Re: [TMIC] Medications

My spasms are worse the lower in my body you go.  Lower part of legs give me
the most problems.  They used to be so  bad my husband would tell me it
looked like I was trying to ride a bicycle.  A couple of times when I was
laying on the sofa they actually flipped me off onto the floor.  Muscles in
legs use to always be reall tight all the time too, so much so that when
they would try to test my reflexes nothing moved.  Now things have gotten
much better, I still have spasms off and on all day (worse when I have been
overdoing it) but not nearly as severe when they occur.  Yes they have
always been worse at night or when I try to lay down to relax.
Lynne

--- On Sun, 7/19/09, Janice  wrote:

From: Janice 
Subject: Re: [TMIC] Medications
To: "lynne myers" , "tmic" 
Date: Sunday, July 19, 2009, 11:31 PM

What are your spasms like? Are they mostly at nite? Also, is it
located from bottom of feet to hip?Janice
- Original Message - 
From: lynne myers 
To: Janice ; tmic 
Sent: Friday, July 17, 2009 6:51 AM
Subject: Re: [TMIC] Medications

The pump is for the spasms.  It works the same as oral Baclofen but uses
much less medication to get the same results.

The actual pump is inserted just above and to the left side of my belly
button. Then the tubing runs from there around my left side and into the
lower part of my spinal column.  The pump is about 4" across and sticks out
about an inch and a half.  Its not really noticable under looser fitting
tops, but real noticable in the summer, especially in my bathing suit.  No
more clingy fabrics for me lol.

Lynne 

--- On Thu, 7/16/09, Janice  wrote:

From: Janice 
Subject: Re: [TMIC] Medications
To: "lynne myers" , " Bernie (S&FS)Butcher" , "tmic" 
Date: Thursday, July 16, 2009, 11:45 PM

Is the Baclofen pump you are using for pain or spasms, etc.?  Also,
where is it inserted?   Janice

 <>

Re: [TMIC] Medications

2009-07-25 Thread L T CHERPESKI

Hi Bernie, what an awful ordeal.  I'm so sorry you had such a bad experience.  
Uh, falling is never a good thing.  Are you ok?
 Linda
  - Original Message - 
  From: Butcher, Bernie (S&FS)<mailto:bernie.butc...@honeywell.com> 
  To: Janice<mailto:jan...@centurytel.net> ; lynne 
myers<mailto:lynnemye...@yahoo.com> ; tmic<mailto:tmic-list@eskimo.com> 
  Sent: Friday, July 24, 2009 7:15 AM
  Subject: RE: [TMIC] Medications

 I had my Baclofen trial on Wednesday, and I have to say it was not a 
pleasant experience. The spinal tap was quite painful, and after an hour, They 
had me walking with walker OK, but an hour later, I could hardly stand – after 
that, all I could do is stay in bed in the hospital. No spasms, but I did get 
leg cramps. They got me into the car at the end of the day like a 190 lb, sack 
of potatoes. When I got home, my brother had to do the same, and also got me 
into bed. The next day, which they said I would b e back to normal, I wasn’t. I 
could stand & take a few steps, but on my way to the bathroom, my legs gave out 
& I fell. Today, Friday, I am back to normal, spasms & all.

 This whole ordeal has gotten me down on Baclofen and the pump idea.

  Bernie

--

  From: Janice [mailto:jan...@centurytel.net] 
  Sent: Monday, July 20, 2009 7:36 PM
  To: lynne myers; tmic
  Subject: Re: [TMIC] Medications

  Lynne,

  Mine were almost that bad at the beginning.   The baclofen really saved my 
sanity!

  Janice

- Original Message - 

From: lynne myers<mailto:lynnemye...@yahoo.com> 

To: tmic<mailto:tmic-list@eskimo.com> 

    Sent: Monday, July 20, 2009 7:27 AM

Subject: Re: [TMIC] Medications

  My spasms are worse the lower in my body you go.  Lower part of legs 
give me the most problems.  They used to be so  bad my husband would tell me it 
looked like I was trying to ride a bicycle.  A couple of times when I was 
laying on the sofa they actually flipped me off onto the floor.  Muscles in 
legs use to always be reall tight all the time too, so much so that when they 
would try to test my reflexes nothing moved.  Now things have gotten much 
better, I still have spasms off and on all day (worse when I have been 
overdoing it) but not nearly as severe when they occur.  Yes they have always 
been worse at night or when I try to lay down to relax.

  Lynne

  --- On Sun, 7/19/09, Janice  wrote:

    From: Janice 
Subject: Re: [TMIC] Medications
To: "lynne myers" , "tmic" 

Date: Sunday, July 19, 2009, 11:31 PM

What are your spasms like? Are they mostly at nite? Also, 
is it located from bottom of feet to hip?Janice

  - Original Message - 

  From: lynne 
myers<http://us.mc534.mail.yahoo.com/mc/compose?to=lynnemye...@yahoo.com> 

  To: 
Janice<http://us.mc534.mail.yahoo.com/mc/compose?to=jan...@centurytel.net> ; 
tmic<http://us.mc534.mail.yahoo.com/mc/compose?to=tmic-l...@eskimo.com> 

  Sent: Friday, July 17, 2009 6:51 AM

  Subject: Re: [TMIC] Medications

The pump is for the spasms.  It works the same as oral 
Baclofen but uses much less medication to get the same results.

The actual pump is inserted just above and to the left side 
of my belly button. Then the tubing runs from there around my left side and 
into the lower part of my spinal column.  The pump is about 4" across and 
sticks out about an inch and a half.  Its not really noticable under looser 
fitting tops, but real noticable in the summer, especially in my bathing suit.  
No more clingy fabrics for me lol.

Lynne 

--- On Thu, 7/16/09, Janice  wrote:

  From: Janice 
  Subject: Re: [TMIC] Medications
  To: "lynne myers" , " Bernie 
(S&FS)Butcher" , "tmic" 
  Date: Thursday, July 16, 2009, 11:45 PM

  Is the Baclofen pump you are using for pain or spasms, 
etc.?  Also, where is it inserted?   Janice

Re: [TMIC] Medications

2009-07-24 Thread Janice

Bernie, I have only had the baclofen in pill form.I wonder what that would 
do for you? I am so  sorry this happened.
Janice
  - Original Message - 
  From: Catherine 
  To: Butcher, Bernie (S&FS) ; Transverse Mylitis Group 
  Sent: Friday, July 24, 2009 11:57 AM
  Subject: Re: [TMIC] Medications


  
Bernie,

I am sorry you had such an unfornutnate experience.  I hope 
you did not hurt yourself further when you fell.  Take care.

Catherine





From: "Butcher, Bernie (S&FS)" 

To: Janice ; lynne myers 
; tmic 
Sent: Friday, July 24, 2009 9:15:23 AM
        Subject: RE: [TMIC] Medications


   I had my Baclofen trial on Wednesday, and I have to say 
it was not a pleasant experience. The spinal tap was quite painful, and after 
an hour, They had me walking with walker OK, but an hour later, I could hardly 
stand – after that, all I could do is stay in bed in the hospital. No spasms, 
but I did get leg cramps. They got me into the car at the end of the day like a 
190 lb, sack of potatoes. When I got home, my brother had to do the same, and 
also got me into bed. The next day, which they said I would b e back to normal, 
I wasn’t. I could stand & take a few steps, but on my way to the bathroom, my 
legs gave out & I fell. Today, Friday, I am back to normal, spasms & all.
   This whole ordeal has gotten me down on Baclofen and the 
pump idea.
 
 
Bernie



From:Janice [mailto:jan...@centurytel.net] 
Sent: Monday, July 20, 2009 7:36 PM
To: lynne myers; tmic
        Subject: Re: [TMIC] Medications
 
Lynne,
Mine were almost that bad at the beginning.   The baclofen 
really saved my sanity!
Janice
- Original Message - 
>From:lynne myers 
>To:tmic 
>Sent:Monday, July 20, 2009 7:27 AM
>Subject:Re: [TMIC] Medications
> 
>My spasms are worse the lower in my body you go.  Lower 
part of legs give me the most problems.  They used to be so  bad my husband 
would tell me it looked like I was trying to ride a bicycle.  A couple of times 
when I was laying on the sofa they actually flipped me off onto the floor.  
Muscles in legs use to always be reall tight all the time too, so much so that 
when they would try to test my reflexes nothing moved.  Now things have gotten 
much better, I still have spasms off and on all day (worse when I have been 
overdoing it) but not nearly as severe when they occur.  Yes they have always 
been worse at night or when I try to lay down to relax.
>Lynne
>
>--- On Sun, 7/19/09, Janice  wrote:
>
            >>From: Janice 
>>Subject: Re: [TMIC] Medications
>>To: "lynne myers" , "tmic" 

>>Date: Sunday, July 19, 2009, 11:31 PM
>> 
>>What are your spasms like? Are they mostly at nite?   
  Also, is it located from bottom of feet to hip?Janice
>>- Original Message - 
>>>From:lynne myers 
>>>To:Janice ; tmic 
>>>Sent:Friday, July 17, 2009 6:51 AM
>>>Subject:Re: [TMIC] Medications
>>> 
>>>The pump is for the spasms.  It works the same as oral 
Baclofen but uses much less medication to get the same results.
>>> 
>>>The actual pump is inserted just above and to the left 
side of my belly button. Then the tubing runs from there around my left side 
and into the lower part of my spinal column.  The pump is about 4" across and 
sticks out about an inch and a half.  Its not really noticable under looser 
fitting tops, but real noticable in the summer, especially in my bathing suit.  
No more clingy fabrics for me lol.
>>> 
        >>>Lynne 
>>>
>>>--- On Thu, 7/16/09, Janice  
wrote:
>>>
>>>>From: Janice 
>>>>Subject: Re: [TMIC] Medications

Re: [TMIC] Medications

2009-07-24 Thread Catherine

  Bernie,
 
I am sorry you had such an unfornutnate experience.  I hope you did not hurt yourself further when you fell.  Take care.
 
Catherine
From: "Butcher, Bernie (S&FS)" To: Janice ; lynne myers ; tmic Sent: Friday, July 24, 2009 9:15:23 AMSubject: RE: [TMIC] Medications   I had my Baclofen trial on Wednesday, and I have to say it was not a pleasant experience. The spinal tap was quite painful, and after an hour, They had me walking with walker OK, but an hour later, I could hardly stand – after that, all I could do is stay in bed in the hospital. No spasms, but I did get leg cramps. They got me into the car at the end of the day like a 190 lb, sack of potatoes. When I got home, my brother had to do the same, and also got me into bed. The next day, which they said I would b e back to normal, I wasn’t. I could stand & take a few steps, but on my way to the bathroom, my legs
 gave out & I fell. Today, Friday, I am back to normal, spasms & all.   This whole ordeal has gotten me down on Baclofen and the pump idea.      BernieFrom:Janice [mailto:jan...@centurytel.net] Sent: Monday, July 20, 2009 7:36 PMTo: lynne myers; tmicSubject: Re: [TMIC] Medications Lynne,Mine were almost that bad at the beginning.   The baclofen really saved my sanity!Janice- Original Message - >From:lynne myers >To:tmic >Sent:Monday, July 20, 2009 7:27 AM>Subject:Re: [TMIC] Medications> >My spasms are worse the lower in my body you go.  Lower part of legs give me the most problems.  They used to be so  bad my husband would tell me it looked like I was trying to ride a bicycle.  A couple of times when I was laying on the sofa they
 actually flipped me off onto the floor.  Muscles in legs use to always be reall tight all the time too, so much so that when they would try to test my reflexes nothing moved.  Now things have gotten much better, I still have spasms off and on all day (worse when I have been overdoing it) but not nearly as severe when they occur.  Yes they have always been worse at night or when I try to lay down to relax.>Lynne>>--- On Sun, 7/19/09, Janice  wrote:>>>From: Janice >>Subject: Re: [TMIC] Medications>>To: "lynne myers" , "tmic" >>Date: Sunday, July 19, 2009, 11:31 PM>> >>What are your spasms like? Are they mostly at nite? Also, is it located from bottom of feet to
 hip?    Janice>>- Original Message - >>>From:lynne myers >>>To:Janice ; tmic >>>Sent:Friday, July 17, 2009 6:51 AM>>>Subject:Re: [TMIC] Medications>>> >>>The pump is for the spasms.  It works the same as oral Baclofen but uses much less medication to get the same results.>>> >>>The actual pump is inserted just above and to the left side of my belly button. Then the tubing runs from there around my left side and into the lower part of my spinal column.  The pump is about 4" across and sticks out about an inch and a half.  Its not really noticable under looser fitting tops, but real noticable in the summer, especially in my bathing suit.  No more clingy fabrics for me
 lol.>>> >>>Lynne >>>>>>--- On Thu, 7/16/09, Janice  wrote:>>>>>>>From: Janice >>>>Subject: Re: [TMIC] Medications>>>>To: "lynne myers" , " Bernie (S&FS)Butcher" , "tmic" >>>>Date: Thursday, July 16, 2009, 11:45 PM>>>> >>>>Is the Baclofen pump you are using for pain or spasms, etc.?  Also, where is it inserted?   Janice>>>>   >

RE: [TMIC] Medications

2009-07-24 Thread Jan Hargrove

Sorry about your rotten experience...guess you got your answer as to 
whether you want the implant?  Hope you're better soon!!  janh

--- On Fri, 7/24/09, Butcher, Bernie (S&FS)  
wrote:









   I had my Baclofen trial on Wednesday, and I have to say it was not a 
pleasant experience. The spinal tap was quite painful, and after an hour, They 
had me walking with walker OK, but an hour later, I could hardly stand – after 
that, all I could do is stay in bed in the hospital. No spasms, but I did get 
leg cramps. They got me into the car at the end of the day like a 190 lb, sack 
of potatoes. When I got home, my brother had to do the same, and also got me 
into bed. The next day, which they said I would b e back to normal, I wasn’t. I 
could stand & take a few steps, but on my way to the bathroom, my legs gave out 
& I fell. Today, Friday, I am back to normal, spasms & all.
   This whole ordeal has gotten me down on Baclofen and the pump idea.    
 
 

Bernie




From: Janice [mailto:jan...@centurytel.net] 
Sent: Monday, July 20, 2009 7:36 PM
To: lynne myers; tmic
Subject: Re: [TMIC] Medications
 

Lynne,

Mine were almost that bad at the beginning.   The baclofen really saved my 
sanity!

Janice


- Original Message - 

From: lynne myers 

To: tmic 

Sent: Monday, July 20, 2009 7:27 AM

Subject: Re: [TMIC] Medications

 





My spasms are worse the lower in my body you go.  Lower part of legs give me 
the most problems.  They used to be so  bad my husband would tell me it looked 
like I was trying to ride a bicycle.  A couple of times when I was laying on 
the sofa they actually flipped me off onto the floor.  Muscles in legs use to 
always be reall tight all the time too, so much so that when they would try to 
test my reflexes nothing moved.  Now things have gotten much better, I still 
have spasms off and on all day (worse when I have been overdoing it) but not 
nearly as severe when they occur.  Yes they have always been worse at night or 
when I try to lay down to relax.

Lynne

--- On Sun, 7/19/09, Janice  wrote:


From: Janice 
Subject: Re: [TMIC] Medications
To: "lynne myers" , "tmic" 
Date: Sunday, July 19, 2009, 11:31 PM

 

What are your spasms like? Are they mostly at nite? Also, is it located 
from bottom of feet to hip?    Janice


- Original Message - 

From: lynne myers 

To: Janice ; tmic 

Sent: Friday, July 17, 2009 6:51 AM

Subject: Re: [TMIC] Medications

 





The pump is for the spasms.  It works the same as oral Baclofen but uses much 
less medication to get the same results.

 

The actual pump is inserted just above and to the left side of my belly button. 
Then the tubing runs from there around my left side and into the lower part of 
my spinal column.  The pump is about 4" across and sticks out about an inch and 
a half.  Its not really noticable under looser fitting tops, but real noticable 
in the summer, especially in my bathing suit.  No more clingy fabrics for me 
lol.

 

Lynne 

--- On Thu, 7/16/09, Janice  wrote:


From: Janice 
Subject: Re: [TMIC] Medications
To: "lynne myers" , " Bernie (S&FS)Butcher" 
, "tmic" 
Date: Thursday, July 16, 2009, 11:45 PM

 

Is the Baclofen pump you are using for pain or spasms, etc.?  Also, where 
is it inserted?   Janice

RE: [TMIC] Medications

2009-07-24 Thread

   I had my Baclofen trial on Wednesday, and I have to say it was not a 
pleasant experience. The spinal tap was quite painful, and after an hour, They 
had me walking with walker OK, but an hour later, I could hardly stand – after 
that, all I could do is stay in bed in the hospital. No spasms, but I did get 
leg cramps. They got me into the car at the end of the day like a 190 lb, sack 
of potatoes. When I got home, my brother had to do the same, and also got me 
into bed. The next day, which they said I would b e back to normal, I wasn’t. I 
could stand & take a few steps, but on my way to the bathroom, my legs gave out 
& I fell. Today, Friday, I am back to normal, spasms & all.

   This whole ordeal has gotten me down on Baclofen and the pump idea.

 

 

Bernie



From: Janice [mailto:jan...@centurytel.net] 
Sent: Monday, July 20, 2009 7:36 PM
To: lynne myers; tmic
Subject: Re: [TMIC] Medications

 

Lynne,

Mine were almost that bad at the beginning.   The baclofen really saved my 
sanity!

Janice

- Original Message - 

From: lynne myers <mailto:lynnemye...@yahoo.com>  

To: tmic <mailto:tmic-list@eskimo.com>  

Sent: Monday, July 20, 2009 7:27 AM

    Subject: Re: [TMIC] Medications

 

My spasms are worse the lower in my body you go.  Lower part of legs give me 
the most problems.  They used to be so  bad my husband would tell me it looked 
like I was trying to ride a bicycle.  A couple of times when I was laying on 
the sofa they actually flipped me off onto the floor.  Muscles in legs use to 
always be reall tight all the time too, so much so that when they would try to 
test my reflexes nothing moved.  Now things have gotten much better, I still 
have spasms off and on all day (worse when I have been overdoing it) but not 
nearly as severe when they occur.  Yes they have always been worse at night or 
when I try to lay down to relax.

Lynne

--- On Sun, 7/19/09, Janice  wrote:


From: Janice 
    Subject: Re: [TMIC] Medications
To: "lynne myers" , "tmic" 
Date: Sunday, July 19, 2009, 11:31 PM

 

What are your spasms like? Are they mostly at nite? Also, is it 
located from bottom of feet to hip?Janice

- Original Message - 

From: lynne myers 
<http://us.mc534.mail.yahoo.com/mc/compose?to=lynnemye...@yahoo.com>  

To: Janice 
<http://us.mc534.mail.yahoo.com/mc/compose?to=jan...@centurytel.net>  ; tmic 
<http://us.mc534.mail.yahoo.com/mc/compose?to=tmic-l...@eskimo.com>  

Sent: Friday, July 17, 2009 6:51 AM

Subject: Re: [TMIC] Medications

 

The pump is for the spasms.  It works the same as oral Baclofen but uses much 
less medication to get the same results.

 

The actual pump is inserted just above and to the left side of my belly button. 
Then the tubing runs from there around my left side and into the lower part of 
my spinal column.  The pump is about 4" across and sticks out about an inch and 
a half.  Its not really noticable under looser fitting tops, but real noticable 
in the summer, especially in my bathing suit.  No more clingy fabrics for me 
lol.

 

Lynne 

--- On Thu, 7/16/09, Janice  wrote:

    
From: Janice 
Subject: Re: [TMIC] Medications
To: "lynne myers" , " Bernie (S&FS)Butcher" 
, "tmic" 
Date: Thursday, July 16, 2009, 11:45 PM

 

Is the Baclofen pump you are using for pain or spasms, etc.?  Also, 
where is it inserted?   Janice

Re: [TMIC] Medications

2009-07-20 Thread Janice

Lynne,
Mine were almost that bad at the beginning.   The baclofen really saved my 
sanity!
Janice
  - Original Message - 
  From: lynne myers 
  To: tmic 
  Sent: Monday, July 20, 2009 7:27 AM
  Subject: Re: [TMIC] Medications

My spasms are worse the lower in my body you go.  Lower part of legs 
give me the most problems.  They used to be so  bad my husband would tell me it 
looked like I was trying to ride a bicycle.  A couple of times when I was 
laying on the sofa they actually flipped me off onto the floor.  Muscles in 
legs use to always be reall tight all the time too, so much so that when they 
would try to test my reflexes nothing moved.  Now things have gotten much 
better, I still have spasms off and on all day (worse when I have been 
overdoing it) but not nearly as severe when they occur.  Yes they have always 
been worse at night or when I try to lay down to relax.
Lynne

--- On Sun, 7/19/09, Janice  wrote:

  From: Janice 
  Subject: Re: [TMIC] Medications
  To: "lynne myers" , "tmic" 

  Date: Sunday, July 19, 2009, 11:31 PM

  What are your spasms like? Are they mostly at nite? Also, is 
it located from bottom of feet to hip?Janice
- Original Message - 
From: lynne myers 
To: Janice ; tmic 
Sent: Friday, July 17, 2009 6:51 AM
        Subject: Re: [TMIC] Medications

  The pump is for the spasms.  It works the same as oral 
Baclofen but uses much less medication to get the same results.

  The actual pump is inserted just above and to the left side 
of my belly button. Then the tubing runs from there around my left side and 
into the lower part of my spinal column.  The pump is about 4" across and 
sticks out about an inch and a half.  Its not really noticable under looser 
fitting tops, but real noticable in the summer, especially in my bathing suit.  
No more clingy fabrics for me lol.

  Lynne 

  --- On Thu, 7/16/09, Janice  wrote:

From: Janice 
        Subject: Re: [TMIC] Medications
To: "lynne myers" , " Bernie 
(S&FS)Butcher" , "tmic" 
Date: Thursday, July 16, 2009, 11:45 PM

Is the Baclofen pump you are using for pain or spasms, 
etc.?  Also, where is it inserted?   Janice

Re: [TMIC] Medications

2009-07-20 Thread Janice

I feel so fortunate that I only have the spasms in my legs.I hope yours 
subside a lot. Janice
  - Original Message - 
  From: rj_ran...@yahoo.com 
  To: Janice ; lynne myers ; tmic 
  Sent: Sunday, July 19, 2009 11:08 PM
  Subject: Re: [TMIC] Medications

  I have mine all over. 
  Sent from my Verizon Wireless BlackBerry

--
  From: "Janice" 
  Date: Sun, 19 Jul 2009 22:31:53 -0500
  To: lynne myers; tmic
  Subject: Re: [TMIC] Medications

  What are your spasms like? Are they mostly at nite? Also, is it 
located from bottom of feet to hip?Janice
- Original Message - 
From: lynne myers 
To: Janice ; tmic 
Sent: Friday, July 17, 2009 6:51 AM
    Subject: Re: [TMIC] Medications

  The pump is for the spasms.  It works the same as oral Baclofen but 
uses much less medication to get the same results.

  The actual pump is inserted just above and to the left side of my 
belly button. Then the tubing runs from there around my left side and into the 
lower part of my spinal column.  The pump is about 4" across and sticks out 
about an inch and a half.  Its not really noticable under looser fitting tops, 
but real noticable in the summer, especially in my bathing suit.  No more 
clingy fabrics for me lol.

  Lynne 

  --- On Thu, 7/16/09, Janice  wrote:

From: Janice 
        Subject: Re: [TMIC] Medications
To: "lynne myers" , " Bernie (S&FS)Butcher" 
, "tmic" 
Date: Thursday, July 16, 2009, 11:45 PM

Is the Baclofen pump you are using for pain or spasms, etc.?  
Also, where is it inserted?   Janice

Re: [TMIC] Medications

2009-07-20 Thread LadyNotes

Linda, thank you for your prayers and I will definitely keep  you updated.
 
Naomi
C-4  Quadriplegic, since July 2, 2005
Due to Transverse  Myelitis
**What's for dinner tonight?  Find quick and easy dinner ideas 
for any occasion. 
(http://food.aol.com/dinner-tonight?ncid=emlcntusfood0009)

Re: [TMIC] Medications

2009-07-20 Thread lynne myers

My spasms are worse the lower in my body you go.  Lower part of legs give me 
the most problems.  They used to be so  bad my husband would tell me it looked 
like I was trying to ride a bicycle.  A couple of times when I was laying on 
the sofa they actually flipped me off onto the floor.  Muscles in legs use to 
always be reall tight all the time too, so much so that when they would try to 
test my reflexes nothing moved.  Now things have gotten much better, I still 
have spasms off and on all day (worse when I have been overdoing it) but not 
nearly as severe when they occur.  Yes they have always been worse at night or 
when I try to lay down to relax.
Lynne

--- On Sun, 7/19/09, Janice  wrote:


From: Janice 
Subject: Re: [TMIC] Medications
To: "lynne myers" , "tmic" 
Date: Sunday, July 19, 2009, 11:31 PM


 


What are your spasms like? Are they mostly at nite? Also, is it located 
from bottom of feet to hip?    Janice

- Original Message - 
From: lynne myers 
To: Janice ; tmic 
Sent: Friday, July 17, 2009 6:51 AM
Subject: Re: [TMIC] Medications






The pump is for the spasms.  It works the same as oral Baclofen but uses much 
less medication to get the same results.
 
The actual pump is inserted just above and to the left side of my belly button. 
Then the tubing runs from there around my left side and into the lower part of 
my spinal column.  The pump is about 4" across and sticks out about an inch and 
a half.  Its not really noticable under looser fitting tops, but real noticable 
in the summer, especially in my bathing suit.  No more clingy fabrics for me 
lol.
 
Lynne 

--- On Thu, 7/16/09, Janice  wrote:


From: Janice 
Subject: Re: [TMIC] Medications
To: "lynne myers" , " Bernie (S&FS)Butcher" 
, "tmic" 
Date: Thursday, July 16, 2009, 11:45 PM


 
Is the Baclofen pump you are using for pain or spasms, etc.?  Also, where 
is it inserted?   Janice

Re: [TMIC] Medications

2009-07-19 Thread rj_rankin

I have mine all over. 
Sent from my Verizon Wireless BlackBerry

-Original Message-
From: "Janice" 

Date: Sun, 19 Jul 2009 22:31:53 
To: lynne myers; tmic
Subject: Re: [TMIC] Medications

What are your spasms like? Are they mostly at nite? Also, is it located 
from bottom of feet to hip?Janice
  - Original Message - 
  From: lynne myers 
  To: Janice ; tmic 
  Sent: Friday, July 17, 2009 6:51 AM
  Subject: Re: [TMIC] Medications

The pump is for the spasms.  It works the same as oral Baclofen but 
uses much less medication to get the same results.

The actual pump is inserted just above and to the left side of my belly 
button. Then the tubing runs from there around my left side and into the lower 
part of my spinal column.  The pump is about 4" across and sticks out about an 
inch and a half.  Its not really noticable under looser fitting tops, but real 
noticable in the summer, especially in my bathing suit.  No more clingy fabrics 
for me lol.

Lynne 

--- On Thu, 7/16/09, Janice  wrote:

  From: Janice 
      Subject: Re: [TMIC] Medications
  To: "lynne myers" , " Bernie (S&FS)Butcher" 
, "tmic" 
  Date: Thursday, July 16, 2009, 11:45 PM

  Is the Baclofen pump you are using for pain or spasms, etc.?  
Also, where is it inserted?   Janice

Re: [TMIC] Medications

2009-07-19 Thread Janice

What are your spasms like? Are they mostly at nite? Also, is it located 
from bottom of feet to hip?Janice
  - Original Message - 
  From: lynne myers 
  To: Janice ; tmic 
  Sent: Friday, July 17, 2009 6:51 AM
  Subject: Re: [TMIC] Medications

The pump is for the spasms.  It works the same as oral Baclofen but 
uses much less medication to get the same results.

The actual pump is inserted just above and to the left side of my belly 
button. Then the tubing runs from there around my left side and into the lower 
part of my spinal column.  The pump is about 4" across and sticks out about an 
inch and a half.  Its not really noticable under looser fitting tops, but real 
noticable in the summer, especially in my bathing suit.  No more clingy fabrics 
for me lol.

Lynne 

--- On Thu, 7/16/09, Janice  wrote:

  From: Janice 
  Subject: Re: [TMIC] Medications
  To: "lynne myers" , " Bernie (S&FS)Butcher" 
, "tmic" 
  Date: Thursday, July 16, 2009, 11:45 PM

  Is the Baclofen pump you are using for pain or spasms, etc.?  
Also, where is it inserted?   Janice

Re: [TMIC] Medications

2009-07-18 Thread Janice

Rob, I wish you good luck with the new meds!Janice
  - Original Message - 
  From: CANDIS KALLEY 
  To: tmic-list 
  Sent: Friday, July 17, 2009 6:48 PM
  Subject: Fwd: [TMIC] Medications

  I sent the attached to Robert but FYI - 

  - Forwarded Message -
  From: "CANDIS KALLEY" 
  To: "Robert Pall" 
  Sent: Friday, July 17, 2009 7:58:36 AM GMT -05:00 US/Canada Eastern
  Subject: Re: [TMIC] Medications

  I have tried the Provigil with little or no difference in the level of 
fatigue.  I also tried Amantadine with the same results.  Provigil is very 
expensive so try to get a sample before buying.

  Life is short! Break the rules! Forgive quickly! Kiss slowly! 
  Love truly, Laugh uncontrollably . 
  And never regret anything that made you smile.

  Prayers and thoughts for you and yours,

  Candy K.

  - Original Message -
  From: "Robert Pall" 
  To: "Janice" , Tmic-list@eskimo.com
  Sent: Friday, July 17, 2009 7:38:57 AM GMT -05:00 US/Canada Eastern
  Subject: RE: [TMIC] Medications

  Janice...I believe my body has gotten so used to these meds..that Dr. Kerr 
felt it would be good to try a change.The new drugs he may try after I have 
weaned myself off the Lyrica are Lamictal or Tegretol (for the banding) and 
Provigil (for fatigue)I would love to hear from other members who currently 
take these drugs as to how beneficial they are. As far as the meds I am weaning 
off I really had no bad reactions...it just feels like they are no longer 
helping.

  All the best!
  Rob in New Jersey

--
  From: Janice [mailto:jan...@centurytel.net] 
  Sent: Thursday, July 16, 2009 11:40 PM
  To: Catherine; Robert Pall; Transverse Mylitis Group
  Subject: Re: [TMIC] Medications

  Rob, why are you getting off the meds?For the usual "taking too many 
drugs" thing or are you having adverse reactions?
  Janice
- Original Message - 
From: Catherine 
To: Robert Pall ; Transverse Mylitis Group 
Sent: Thursday, July 16, 2009 2:47 PM
Subject: Re: [TMIC] Medications

  Good Luck Rob I wish you the best!!

  From: Robert Pall 
  To: Tmic-list@eskimo.com
  Sent: Thursday, July 16, 2009 2:40:07 PM
  Subject: [TMIC] Medications

  Medications 
  I mentioned previously that I visited Dr. Kerr on 
7/1/09 and we decided to adjust my meds. Presently for the most part I take 2 
meds for the banding, pins & needles and numbness. They are 4-Aminopyridine and 
Lyrica. I was taking the 4-aminopyridine (a Potassium channel blocker) twice a 
day (20 mgs each)…I have been taking this medicine for approx. 8 years…..2 
weeks ago I cut my dosage in half and starting tomorrow I will cease taking 
this med…so far I have not noticed any changes resulting in the lower dose and 
I will keep you informed as to any changes I experience going off this med 
completely. I also take 150 mg of Lyrica 3x per day. Starting today I will cut 
this down to twice a day for 2 weeks and then once a day for 2 weeks before 
stopping it altogether. Hopefully I will notice little or no change getting off 
this medication which I have been on for more than 4 years.
  Assuming no problems getting off the Lyrica..Dr. 
Kerr will prescribe a new med for the banding (don't ask me the name…I promise 
to let you know)…he also said he could prescribe a new med to help with my 
constant fatigue (again don't ask me the name).
  As per his advice I am now swimming for an hour 
at least 3 times a week..it is not doing much for the TM but it is getting  my 
body in better shape. Having had TM for almost 12 years my dreams of a cure 
seem more and more distant..so I therefore vow to try and keep my body as 
healthy as possible and deal with the pain and discomfort as much as medicine 
can help me.
  I will keep the group informed as to the weaning 
off of my current meds and any new meds I begin to take! 
  All the best! 
  Rob in New Jersey

Re: [TMIC] Medications

2009-07-18 Thread Janice

It is incredible to me that so many of you are using so much baclofen.I 
didn't know how heavily it could be used,
and I feel really blessed that so little of it helped me so much with spasms.   
  Of course, I don't know how severe
your all's spasms are.Anyway, sure hope you get this taken care of and 
will be among the "definitely improving".
   Janice
  - Original Message - 
  From: L T CHERPESKI 
  To: bernie.butc...@honeywell.com ; tmic-list@eskimo.com ; ladyno...@aol.com 
  Sent: Friday, July 17, 2009 10:28 PM
  Subject: Re: [TMIC] Medications

  Hi Naomi,

  You are in my prayers.  I can see why your body would see the pump as a 
foreign object and naturally want to reject it.  So, may you heal quickly from 
this bladder infection so the doctor is able to get that pump removed safely.  
Looking forward to hearing that you are feeling so much better and are back in 
physical therapy. Take care, Naomi, and please keep us posted on how you're 
doing.

  Linda
- Original Message - 
From: ladyno...@aol.com 
To: bernie.butc...@honeywell.com ; tmic-list@eskimo.com 
Sent: Friday, July 17, 2009 10:48 AM
Subject: Re: [TMIC] Medications

As you all are contemplating your Baclofen doses or trial, I am waiting for 
the neurosurgeon to remove my Baclofen pump.

I had my pump put in July 2006. Initially the pump worked well for 
preventing spasms, but I did not know that it would prevent me from standing or 
walking, because I wasn't getting any physical therapy for a very long time. 
Once I got the chance to get physical therapy, I wasn't able to stand at all. I 
was like a limp noodle. No matter how hard they tried, I wasn't able to stand, 
not in the standing frame nor with a walker. I had the doctor reduce the 
Baclofen dose in my pump, in small increments. No matter how much he reduced, 
there was still no change.

About six months ago, my pump began to give me problems such as swelling 
and tenderness to the touch. I spent two visits in the hospital within three 
months, for the same problem. I was told they couldn't find anything wrong with 
the pump, but each time they put me on intravenous antibiotics and the swelling 
went down and tenderness diminished. This led me to believe that there was an 
infection somewhere. After my pump kept swelling and the neurosurgeon's nurse 
told me that the pump is a foreign object in your body, and the body is 
constantly trying to reject it, and some patients pumps were rejected totally 
outside of the body, I decided to have my pump removed. My oral Baclofen was 
started up again, and I was weaned off the pump. I then began to have more 
tone, and am able to stand better. I'm not able to walk yet, but I have some 
inpatient physical therapy coming up once I get this pump removed.

I tried once to have the pump removed but was unsuccessful. They could not 
get an IV in. They tried from my feet to my exterior Jugular. Once I get over 
this bladder infection, they will try again. Wish me luck.

Naomi
C-4 Quadriplegic, since July 2, 2005
Due to Transverse Myelitis

Can love help you live longer? Find out now.

Re: [TMIC] Medications

2009-07-17 Thread L T CHERPESKI

Hi Naomi,

You are in my prayers. I can see why your body would see the pump as a foreign
object and naturally want to reject it. So, may you heal quickly from this
bladder infection so the doctor is able to get that pump removed safely.
Looking forward to hearing that you are feeling so much better and are back in
physical therapy. Take care, Naomi, and please keep us posted on how you're
doing.

Linda
- Original Message -
From: ladyno...@aol.com<mailto:ladyno...@aol.com>
To: bernie.butc...@honeywell.com<mailto:bernie.butc...@honeywell.com> ;
tmic-list@eskimo.com<mailto:tmic-list@eskimo.com>
Sent: Friday, July 17, 2009 10:48 AM
Subject: Re: [TMIC] Medications

As you all are contemplating your Baclofen doses or trial, I am waiting for
the neurosurgeon to remove my Baclofen pump.

I had my pump put in July 2006. Initially the pump worked well for preventing
spasms, but I did not know that it would prevent me from standing or walking,
because I wasn't getting any physical therapy for a very long time. Once I got
the chance to get physical therapy, I wasn't able to stand at all. I was like a
limp noodle. No matter how hard they tried, I wasn't able to stand, not in the
standing frame nor with a walker. I had the doctor reduce the Baclofen dose in
my pump, in small increments. No matter how much he reduced, there was still no
change.

About six months ago, my pump began to give me problems such as swelling and
tenderness to the touch. I spent two visits in the hospital within three
months, for the same problem. I was told they couldn't find anything wrong with
the pump, but each time they put me on intravenous antibiotics and the swelling
went down and tenderness diminished. This led me to believe that there was an
infection somewhere. After my pump kept swelling and the neurosurgeon's nurse
told me that the pump is a foreign object in your body, and the body is
constantly trying to reject it, and some patients pumps were rejected totally
outside of the body, I decided to have my pump removed. My oral Baclofen was
started up again, and I was weaned off the pump. I then began to have more
tone, and am able to stand better. I'm not able to walk yet, but I have some
inpatient physical therapy coming up once I get this pump removed.

I tried once to have the pump removed but was unsuccessful. They could not
get an IV in. They tried from my feet to my exterior Jugular. Once I get over
this bladder infection, they will try again. Wish me luck.

Naomi
C-4 Quadriplegic, since July 2, 2005
Due to Transverse Myelitis

--
Can love help you live longer? Find out
now<http://personals.aol.com/articles/2009/02/18/longer-lives-through-relationships/?ncid=emlweuslove0001>.

RE: [TMIC] Medications

I am also considering having my pump removed but not because I am having any 
problems with it, just because of the cost of maintaining and getting it 
filled.  Even with health insurance my co-pays and my 20% end up costing me 
well over $400 every three months when I get it filled.  That and having to 
drive a couple hundred miles to get it done.
Lynne

--- On Fri, 7/17/09, Butcher, Bernie (S&FS)  
wrote:


From: Butcher, Bernie (S&FS) 
Subject: RE: [TMIC] Medications
To: ladyno...@aol.com, tmic-list@eskimo.com
Date: Friday, July 17, 2009, 1:30 PM



Hi Naomi - please keep me informed, they want to put one in me if trial works
 
BERNARD BUTCHER
 



From: ladyno...@aol.com [mailto:ladyno...@aol.com] 
Sent: Friday, July 17, 2009 12:49 PM
To: Butcher, Bernie (S&FS); tmic-list@eskimo.com
Subject: Re: [TMIC] Medications



As you all are contemplating your Baclofen doses or trial, I am waiting for the 
neurosurgeon to remove my Baclofen pump.
 
I had my pump put in July 2006. Initially the pump worked well for preventing 
spasms, but I did not know that it would prevent me from standing or walking, 
because I wasn't getting any physical therapy for a very long time. Once I got 
the chance to get physical therapy, I wasn't able to stand at all. I was like a 
limp noodle. No matter how hard they tried, I wasn't able to stand, not in the 
standing frame nor with a walker. I had the doctor reduce the Baclofen dose in 
my pump, in small increments. No matter how much he reduced, there was still no 
change.
 
About six months ago, my pump began to give me problems such as swelling and 
tenderness to the touch. I spent two visits in the hospital within three 
months, for the same problem. I was told they couldn't find anything wrong with 
the pump, but each time they put me on intravenous antibiotics and the swelling 
went down and tenderness diminished. This led me to believe that there was an 
infection somewhere. After my pump kept swelling and the neurosurgeon's nurse 
told me that the pump is a foreign object in your body, and the body is 
constantly trying to reject it, and some patients pumps were rejected totally 
outside of the body, I decided to have my pump removed. My oral Baclofen was 
started up again, and I was weaned off the pump. I then began to have more 
tone, and am able to stand better. I'm not able to walk yet, but I have some 
inpatient physical therapy coming up once I get this pump removed.
 
I tried once to have the pump removed but was unsuccessful. They could not get 
an IV in. They tried from my feet to my exterior Jugular. Once I get over this 
bladder infection, they will try again. Wish me luck.
 
Naomi
C-4 Quadriplegic, since July 2, 2005
Due to Transverse Myelitis



Can love help you live longer? Find out now.

Re: [TMIC] Medications

Naomi,
If you have a choice of neurosurgeons at U of M I highly recommend Dr. Sager.  
He did my pump surgery.
Lynne

--- On Fri, 7/17/09, ladyno...@aol.com  wrote:

From: ladyno...@aol.com 
Subject: Re: [TMIC] Medications
To: fr...@franksheldon.com, tmic-list@eskimo.com
Date: Friday, July 17, 2009, 4:54 PM

Everyone I tell about them not being able to get an IV in, just cannot believe 
it. My sister, who is a nurse, said I need to go to a different hospital. I am 
in the process of having my primary care physician set me up with a 
neurosurgeon at University of Michigan Hospital. I sure hope so, because I am 
actually afraid to go back there. It t00k three nurses and an 
anesthesiologists, using ultrasound, and poking me all over, to tell me that 
they could not get the IV in.

Naomi
C-4 Quadriplegic, since July 2, 2005
Due to Transverse Myelitis

Can love help you live longer? Find out now.

Re: [TMIC] Medications

2009-07-17 Thread LadyNotes

Everyone I tell about them not being able to get an IV in,  just cannot 
believe it. My sister, who is a nurse, said I need to go to a  different 
hospital. I am in the process of having my primary care physician set  me up 
with 
a neurosurgeon at University of Michigan Hospital. I sure hope so,  because 
I am actually afraid to go back there. It t00k three nurses and an  
anesthesiologists, using ultrasound, and poking me all over, to tell me that  
they 
could not get the IV in.
 
Naomi
C-4  Quadriplegic, since July 2, 2005
Due to Transverse  Myelitis
**Can love help you live longer? Find out now. 
(http://personals.aol.com/articles/2009/02/18/longer-lives-through-relationships/?ncid=emlweu
slove0001)

Re: [TMIC] Medications

2009-07-17 Thread fr...@franksheldon.com


> I tried once to have the pump removed but was unsuccessful.  They could not 
> get an IV in. They tried from my feet to my exterior Jugular.  Once I get 
> over this bladder infection, they will try again. Wish me  luck.
>  
 Naomi,

Your story is very familiar. I know dozens of people who have had the same 
problems with their pumps.

Not being able to place an IV into your body doesn't happen anymore in North 
America or Europe.

Real Doctors know how to put "Butterfly" needles in the back of your hands, or 
do a "Cut down" on a big vein.

I think you need to find an Attorney to help with your health care.  You might 
get adequate care along with money for your pain and suffering!!

Take care

F

RE: [TMIC] Medications

2009-07-17 Thread

Hi Naomi - please keep me informed, they want to put one in me if trial
works
 
BERNARD BUTCHER
 



From: ladyno...@aol.com [mailto:ladyno...@aol.com] 
Sent: Friday, July 17, 2009 12:49 PM
To: Butcher, Bernie (S&FS); tmic-list@eskimo.com
Subject: Re: [TMIC] Medications


As you all are contemplating your Baclofen doses or trial, I am waiting
for the neurosurgeon to remove my Baclofen pump.
 
I had my pump put in July 2006. Initially the pump worked well for
preventing spasms, but I did not know that it would prevent me from
standing or walking, because I wasn't getting any physical therapy for a
very long time. Once I got the chance to get physical therapy, I wasn't
able to stand at all. I was like a limp noodle. No matter how hard they
tried, I wasn't able to stand, not in the standing frame nor with a
walker. I had the doctor reduce the Baclofen dose in my pump, in small
increments. No matter how much he reduced, there was still no change.
 
About six months ago, my pump began to give me problems such as swelling
and tenderness to the touch. I spent two visits in the hospital within
three months, for the same problem. I was told they couldn't find
anything wrong with the pump, but each time they put me on intravenous
antibiotics and the swelling went down and tenderness diminished. This
led me to believe that there was an infection somewhere. After my pump
kept swelling and the neurosurgeon's nurse told me that the pump is a
foreign object in your body, and the body is constantly trying to reject
it, and some patients pumps were rejected totally outside of the body, I
decided to have my pump removed. My oral Baclofen was started up again,
and I was weaned off the pump. I then began to have more tone, and am
able to stand better. I'm not able to walk yet, but I have some
inpatient physical therapy coming up once I get this pump removed.
 
I tried once to have the pump removed but was unsuccessful. They could
not get an IV in. They tried from my feet to my exterior Jugular. Once I
get over this bladder infection, they will try again. Wish me luck.
 
Naomi
C-4 Quadriplegic, since July 2, 2005
Due to Transverse Myelitis



Can love help you live longer? Find out now
<http://personals.aol.com/articles/2009/02/18/longer-lives-through-relat
ionships/?ncid=emlweuslove0001> .

Re: [TMIC] Medications

2009-07-17 Thread LadyNotes

As you all are contemplating your Baclofen doses or trial, I am waiting
for the neurosurgeon to remove my Baclofen pump.

I had my pump put in July 2006. Initially the pump worked well for
preventing spasms, but I did not know that it would prevent me from standing
or
walking, because I wasn't getting any physical therapy for a very long time.
Once I got the chance to get physical therapy, I wasn't able to stand at
all. I was like a limp noodle. No matter how hard they tried, I wasn't able to
stand, not in the standing frame nor with a walker. I had the doctor
reduce the Baclofen dose in my pump, in small increments. No matter how much
he
reduced, there was still no change.

About six months ago, my pump began to give me problems such as swelling
and tenderness to the touch. I spent two visits in the hospital within three
months, for the same problem. I was told they couldn't find anything wrong
with the pump, but each time they put me on intravenous antibiotics and
the swelling went down and tenderness diminished. This led me to believe that
there was an infection somewhere. After my pump kept swelling and the
neurosurgeon's nurse told me that the pump is a foreign object in your body,
and the body is constantly trying to reject it, and some patients pumps were
rejected totally outside of the body, I decided to have my pump removed. My
oral Baclofen was started up again, and I was weaned off the pump. I then
began to have more tone, and am able to stand better. I'm not able to walk
yet, but I have some inpatient physical therapy coming up once I get this
pump removed.

I tried once to have the pump removed but was unsuccessful. They could not
get an IV in. They tried from my feet to my exterior Jugular. Once I get
over this bladder infection, they will try again. Wish me luck.

Naomi
C-4 Quadriplegic, since July 2, 2005
Due to Transverse Myelitis
**Can love help you live longer? Find out now.
(http://personals.aol.com/articles/2009/02/18/longer-lives-through-relationships/?ncid=emlweu
slove0001)

Re: [TMIC] Medications

2009-07-17 Thread Linda Egli



Rob  - I took Provigil the first  year of my TM because the fatigue was so 
horrible.  It really didn't help & my side effect was terrible  times trying to 
get to sleep.  I would get up at 6AM to take the Provigil & still be awake at 
3AM the next morning.  I finally read that Provigil is also used for narcolepsy 
& maybe that is why sleeping was so difficult for me.  Hope it works better for 
you.  I finally found Amantidine that has worked wonders for my fatigue.
Linda E.




 





 
>

RE: [TMIC] Medications

2009-07-17 Thread

Hi Rob - I took provigil but it only worked sometimes. Now I take
Ritalin
 
BERNARD BUTCHER
 



From: Robert Pall [mailto:rp...@neillsupply.com] 
Sent: Friday, July 17, 2009 7:39 AM
To: Janice; Tmic-list@eskimo.com
Subject: RE: [TMIC] Medications


Janice...I believe my body has gotten so used to these meds..that Dr.
Kerr felt it would be good to try a change.The new drugs he may try
after I have weaned myself off the Lyrica are Lamictal or Tegretol (for
the banding) and Provigil (for fatigue)I would love to hear from
other members who currently take these drugs as to how beneficial they
are. As far as the meds I am weaning off I really had no bad
reactions...it just feels like they are no longer helping.
 
All the best!
Rob in New Jersey



From: Janice [mailto:jan...@centurytel.net] 
Sent: Thursday, July 16, 2009 11:40 PM
To: Catherine; Robert Pall; Transverse Mylitis Group
Subject: Re: [TMIC] Medications


Rob, why are you getting off the meds?For the usual "taking too many
drugs" thing or are you having adverse reactions?
Janice

- Original Message - 
From: Catherine <mailto:camoa...@yahoo.com>  
To: Robert Pall <mailto:rp...@neillsupply.com>  ; Transverse
Mylitis Group <mailto:tmic-list@eskimo.com>  
Sent: Thursday, July 16, 2009 2:47 PM
Subject: Re: [TMIC] Medications



Good Luck Rob I wish you the best!!





From: Robert Pall 
To: Tmic-list@eskimo.com
Sent: Thursday, July 16, 2009 2:40:07 PM
Subject: [TMIC] Medications

Medications 
I mentioned previously that I visited Dr. Kerr on 7/1/09 and we
decided to adjust my meds. Presently for the most part I take 2 meds for
the banding, pins & needles and numbness. They are 4-Aminopyridine and
Lyrica. I was taking the 4-aminopyridine (a Potassium channel blocker)
twice a day (20 mgs each)...I have been taking this medicine for approx.
8 years.2 weeks ago I cut my dosage in half and starting tomorrow I
will cease taking this med...so far I have not noticed any changes
resulting in the lower dose and I will keep you informed as to any
changes I experience going off this med completely. I also take 150 mg
of Lyrica 3x per day. Starting today I will cut this down to twice a day
for 2 weeks and then once a day for 2 weeks before stopping it
altogether. Hopefully I will notice little or no change getting off this
medication which I have been on for more than 4 years.
Assuming no problems getting off the Lyrica..Dr. Kerr will
prescribe a new med for the banding (don't ask me the name...I promise
to let you know)...he also said he could prescribe a new med to help
with my constant fatigue (again don't ask me the name).
As per his advice I am now swimming for an hour at least 3 times
a week..it is not doing much for the TM but it is getting  my body in
better shape. Having had TM for almost 12 years my dreams of a cure seem
more and more distant..so I therefore vow to try and keep my body as
healthy as possible and deal with the pain and discomfort as much as
medicine can help me.
I will keep the group informed as to the weaning off of my
current meds and any new meds I begin to take! 
All the best! 
Rob in New Jersey 




<>

RE: [TMIC] Medications

2009-07-17 Thread

Hi Lynne - my neuro prescribed 60mg/day of of baclofen pills (working up
in increments from 10mg), but when I got to 20mg, I became like a rag
doll. I couldn't sit up without tilting over, and when I got tired (like
at 5pm every day), I could hardly stand up (with walker of course). She
said with the pump, that wouldn't happen, because it's a minute dose,
directly where I need it. The only bladder issue I have is going too
often. If my legs become weak, I will be very disappointed
 
BERNARD BUTCHER
 



From: lynne myers [mailto:lynnemye...@yahoo.com] 
Sent: Thursday, July 16, 2009 11:03 PM
To: Butcher, Bernie (S&FS); tmic
Subject: RE: [TMIC] Medications


Barney,
I have had a baclofen pump in for a couple of years now.  Just wish the
results I was getting now were half as good as what I got from the
trial.  But when my dosage is adjusted high enough to get those results
I have increased bladder issues and weakness.
Hoping things work out better for you.
Lynne

--- On Thu, 7/16/09, Butcher, Bernie (S&FS)
 wrote:



From: Butcher, Bernie (S&FS) 
    Subject: RE: [TMIC] Medications
To: "Robert Pall" , Tmic-list@eskimo.com
Date: Thursday, July 16, 2009, 3:15 PM



Hi Rob - do you take Baclofen? Next week I am going in the
hospital for a spinal tap trial before I get a Baclofen pump installed.
I am wary about the  whole thing

 

Barney

Re: [TMIC] Medications

The pump is for the spasms.  It works the same as oral Baclofen but uses much 
less medication to get the same results.
 
The actual pump is inserted just above and to the left side of my belly button. 
Then the tubing runs from there around my left side and into the lower part of 
my spinal column.  The pump is about 4" across and sticks out about an inch and 
a half.  Its not really noticable under looser fitting tops, but real noticable 
in the summer, especially in my bathing suit.  No more clingy fabrics for me 
lol.
 
Lynne 

--- On Thu, 7/16/09, Janice  wrote:


From: Janice 
Subject: Re: [TMIC] Medications
To: "lynne myers" , " Bernie (S&FS)Butcher" 
, "tmic" 
Date: Thursday, July 16, 2009, 11:45 PM


 
Is the Baclofen pump you are using for pain or spasms, etc.?  Also, where 
is it inserted?   Janice

RE: [TMIC] Medications

Rob,
I have been taking Tegretol for a couple of years now for the banding and it is 
working great.  I still have some banding there but not nearlly as bad as it 
used to be.  It doesnt take my breath away when it happens and I can continue 
to function thur episodes now.
 
I tried the Lamictal, but developed a rash so had to stop taking it before I 
ever found out if it would work.
 
Lynne

--- On Fri, 7/17/09, Robert Pall  wrote:


From: Robert Pall 
Subject: RE: [TMIC] Medications
To: "Janice" , Tmic-list@eskimo.com
Date: Friday, July 17, 2009, 7:38 AM



#yiv1258366108 DIV {
MARGIN:0px;}


Janice...I believe my body has gotten so used to these meds..that Dr. Kerr felt 
it would be good to try a change.The new drugs he may try after I have weaned 
myself off the Lyrica are Lamictal or Tegretol (for the banding) and Provigil 
(for fatigue)I would love to hear from other members who currently take 
these drugs as to how beneficial they are. As far as the meds I am weaning off 
I really had no bad reactions...it just feels like they are no longer helping.
 
All the best!
Rob in New Jersey

RE: [TMIC] Medications

2009-07-17 Thread Robert Pall

Janice...I believe my body has gotten so used to these meds..that Dr.
Kerr felt it would be good to try a change.The new drugs he may try
after I have weaned myself off the Lyrica are Lamictal or Tegretol (for
the banding) and Provigil (for fatigue)I would love to hear from
other members who currently take these drugs as to how beneficial they
are. As far as the meds I am weaning off I really had no bad
reactions...it just feels like they are no longer helping.
 
All the best!
Rob in New Jersey



From: Janice [mailto:jan...@centurytel.net] 
Sent: Thursday, July 16, 2009 11:40 PM
To: Catherine; Robert Pall; Transverse Mylitis Group
Subject: Re: [TMIC] Medications


Rob, why are you getting off the meds?For the usual "taking too many
drugs" thing or are you having adverse reactions?
Janice

- Original Message - 
From: Catherine <mailto:camoa...@yahoo.com>  
To: Robert Pall <mailto:rp...@neillsupply.com>  ; Transverse
Mylitis Group <mailto:tmic-list@eskimo.com>  
Sent: Thursday, July 16, 2009 2:47 PM
Subject: Re: [TMIC] Medications



Good Luck Rob I wish you the best!!





From: Robert Pall 
To: Tmic-list@eskimo.com
Sent: Thursday, July 16, 2009 2:40:07 PM
Subject: [TMIC] Medications

Medications 
I mentioned previously that I visited Dr. Kerr on 7/1/09 and we
decided to adjust my meds. Presently for the most part I take 2 meds for
the banding, pins & needles and numbness. They are 4-Aminopyridine and
Lyrica. I was taking the 4-aminopyridine (a Potassium channel blocker)
twice a day (20 mgs each)...I have been taking this medicine for approx.
8 years.2 weeks ago I cut my dosage in half and starting tomorrow I
will cease taking this med...so far I have not noticed any changes
resulting in the lower dose and I will keep you informed as to any
changes I experience going off this med completely. I also take 150 mg
of Lyrica 3x per day. Starting today I will cut this down to twice a day
for 2 weeks and then once a day for 2 weeks before stopping it
altogether. Hopefully I will notice little or no change getting off this
medication which I have been on for more than 4 years.
Assuming no problems getting off the Lyrica..Dr. Kerr will
prescribe a new med for the banding (don't ask me the name...I promise
to let you know)...he also said he could prescribe a new med to help
with my constant fatigue (again don't ask me the name).
As per his advice I am now swimming for an hour at least 3 times
a week..it is not doing much for the TM but it is getting  my body in
better shape. Having had TM for almost 12 years my dreams of a cure seem
more and more distant..so I therefore vow to try and keep my body as
healthy as possible and deal with the pain and discomfort as much as
medicine can help me.
I will keep the group informed as to the weaning off of my
current meds and any new meds I begin to take! 
All the best! 
Rob in New Jersey 




<>

Re: [TMIC] Medications

2009-07-16 Thread Janice

MedicationsIs the Baclofen pump you are using for pain or spasms, etc.?  
Also, where is it inserted?   Janice
  - Original Message - 
  From: lynne myers 
  To: Bernie (S&FS)Butcher ; tmic 
  Sent: Thursday, July 16, 2009 10:02 PM
  Subject: RE: [TMIC] Medications

Barney,
I have had a baclofen pump in for a couple of years now.  Just wish the 
results I was getting now were half as good as what I got from the trial.  But 
when my dosage is adjusted high enough to get those results I have increased 
bladder issues and weakness.
Hoping things work out better for you.
Lynne

--- On Thu, 7/16/09, Butcher, Bernie (S&FS) 
 wrote:

  From: Butcher, Bernie (S&FS) 
      Subject: RE: [TMIC] Medications
  To: "Robert Pall" , Tmic-list@eskimo.com
  Date: Thursday, July 16, 2009, 3:15 PM

  Hi Rob – do you take Baclofen? Next week I am going in the hospital 
for a spinal tap trial before I get a Baclofen pump installed. I am wary about 
the  whole thing

  Barney

--

Re: [TMIC] Medications

2009-07-16 Thread Janice

MedicationsBarney, I have taken Baclofen for about 2 years.It really helps 
leg/foot spasms I get at nite.I like it.
   Janice
  - Original Message - 
  From: Butcher, Bernie (S&FS) 
  To: Robert Pall ; Tmic-list@eskimo.com 
  Sent: Thursday, July 16, 2009 2:15 PM
  Subject: RE: [TMIC] Medications

  Hi Rob - do you take Baclofen? Next week I am going in the hospital for a 
spinal tap trial before I get a Baclofen pump installed. I am wary about the  
whole thing

  Barney

--

  From: Robert Pall [mailto:rp...@neillsupply.com] 
  Sent: Thursday, July 16, 2009 2:40 PM
  To: Tmic-list@eskimo.com
  Subject: [TMIC] Medications

  I mentioned previously that I visited Dr. Kerr on 7/1/09 and we 
decided to adjust my meds. Presently for the most part I take 2 meds for the 
banding, pins & needles and numbness. They are 4-Aminopyridine and Lyrica. I 
was taking the 4-aminopyridine (a Potassium channel blocker) twice a day (20 
mgs each).I have been taking this medicine for approx. 8 years...2 weeks ago I 
cut my dosage in half and starting tomorrow I will cease taking this med.so far 
I have not noticed any changes resulting in the lower dose and I will keep you 
informed as to any changes I experience going off this med completely. I also 
take 150 mg of Lyrica 3x per day. Starting today I will cut this down to twice 
a day for 2 weeks and then once a day for 2 weeks before stopping it 
altogether. Hopefully I will notice little or no change getting off this 
medication which I have been on for more than 4 years.

  Assuming no problems getting off the Lyrica..Dr. Kerr will prescribe 
a new med for the banding (don't ask me the name.I promise to let you know).he 
also said he could prescribe a new med to help with my constant fatigue (again 
don't ask me the name).

  As per his advice I am now swimming for an hour at least 3 times a 
week..it is not doing much for the TM but it is getting  my body in better 
shape. Having had TM for almost 12 years my dreams of a cure seem more and more 
distant..so I therefore vow to try and keep my body as healthy as possible and 
deal with the pain and discomfort as much as medicine can help me.

  I will keep the group informed as to the weaning off of my current 
meds and any new meds I begin to take! 

  All the best! 
  Rob in New Jersey

Re: [TMIC] Medications

2009-07-16 Thread Janice

Rob, why are you getting off the meds?For the usual "taking too many drugs" 
thing or are you having adverse reactions?
Janice
  - Original Message - 
  From: Catherine 
  To: Robert Pall ; Transverse Mylitis Group 
  Sent: Thursday, July 16, 2009 2:47 PM
  Subject: Re: [TMIC] Medications

Good Luck Rob I wish you the best!!

From: Robert Pall 
To: Tmic-list@eskimo.com
Sent: Thursday, July 16, 2009 2:40:07 PM
Subject: [TMIC] Medications

Medications 
I mentioned previously that I visited Dr. Kerr on 
7/1/09 and we decided to adjust my meds. Presently for the most part I take 2 
meds for the banding, pins & needles and numbness. They are 4-Aminopyridine and 
Lyrica. I was taking the 4-aminopyridine (a Potassium channel blocker) twice a 
day (20 mgs each)…I have been taking this medicine for approx. 8 years…..2 
weeks ago I cut my dosage in half and starting tomorrow I will cease taking 
this med…so far I have not noticed any changes resulting in the lower dose and 
I will keep you informed as to any changes I experience going off this med 
completely. I also take 150 mg of Lyrica 3x per day. Starting today I will cut 
this down to twice a day for 2 weeks and then once a day for 2 weeks before 
stopping it altogether. Hopefully I will notice little or no change getting off 
this medication which I have been on for more than 4 years.
Assuming no problems getting off the Lyrica..Dr. 
Kerr will prescribe a new med for the banding (don't ask me the name…I promise 
to let you know)…he also said he could prescribe a new med to help with my 
constant fatigue (again don't ask me the name).
As per his advice I am now swimming for an hour at 
least 3 times a week..it is not doing much for the TM but it is getting  my 
body in better shape. Having had TM for almost 12 years my dreams of a cure 
seem more and more distant..so I therefore vow to try and keep my body as 
healthy as possible and deal with the pain and discomfort as much as medicine 
can help me.
I will keep the group informed as to the weaning 
off of my current meds and any new meds I begin to take! 
All the best! 
Rob in New Jersey  

<>

RE: [TMIC] Medications

2009-07-16 Thread lynne myers

Barney,
I have had a baclofen pump in for a couple of years now.  Just wish the results 
I was getting now were half as good as what I got from the trial.  But when my 
dosage is adjusted high enough to get those results I have increased bladder 
issues and weakness.
Hoping things work out better for you.
Lynne

--- On Thu, 7/16/09, Butcher, Bernie (S&FS)  
wrote:

From: Butcher, Bernie (S&FS) 
Subject: RE: [TMIC] Medications
To: "Robert Pall" , Tmic-list@eskimo.com
Date: Thursday, July 16, 2009, 3:15 PM




 
 

Medications

 

 







Hi Rob – do you take Baclofen? Next week
I am going in the hospital for a spinal tap trial before I get a Baclofen pump
installed. I am wary about the  whole thing 

   



Barney

RE: [TMIC] Medications

2009-07-16 Thread jrushton

 We'll all be 'with' you, Barney and waiting to see how you are.

Please, all of you?  There is a little girl I watched every day that I drove
to work since she lived on the main street so I got to see her grow to the
age of about 8 and then they moved and I got the TM.  Just yesterday we got
word that she was hit with TM, also.  I don't know any details but I am
asking for thoughts and prayers for her and her family.  Jeanne

 
---Original Message---
 
From: Butcher, Bernie (S&FS)
Date: 7/16/2009 2:15:58 PM
To: Robert Pall;  Tmic-list@eskimo.com
Subject: RE: [TMIC] Medications
 
Hi Rob  do you take Baclofen? Next week I am going in the hospital for a
spinal tap trial before I get a Baclofen pump installed. I am wary about the
 whole thing
 
Barney



From: Robert Pall [mailto:rp...@neillsupply.com] 
Sent: Thursday, July 16, 2009 2:40 PM
To: Tmic-list@eskimo.com
Subject: [TMIC] Medications
 
I mentioned previously that I visited Dr. Kerr on 7/1/09 and we
decided to adjust my meds. Presently for the most part I take 2 meds for the
banding, pins & needles and numbness. They are 4-Aminopyridine and Lyrica. I
was taking the 4-aminopyridine (a Potassium channel blocker) twice a day (20
mgs each)I have been taking this medicine for approx. 8 years..2 weeks ago
I cut my dosage in half and starting tomorrow I will cease taking this
medso far I have not noticed any changes resulting in the lower dose and I
will keep you informed as to any changes I experience going off this med
completely. I also take 150 mg of Lyrica 3x per day. Starting today I will
cut this down to twice a day for 2 weeks and then once a day for 2 weeks
before stopping it altogether. Hopefully I will notice little or no change
getting off this medication which I have been on for more than 4 years.
Assuming no problems getting off the Lyrica..Dr. Kerr will prescribe
a new med for the banding (don't ask me the nameI promise to let you
know)he also said he could prescribe a new med to help with my constant
fatigue (again don't ask me the name).
As per his advice I am now swimming for an hour at least 3 times a
week..it is not doing much for the TM but it is getting  my body in better
shape. Having had TM for almost 12 years my dreams of a cure seem more and
more distant..so I therefore vow to try and keep my body as healthy as
possible and deal with the pain and discomfort as much as medicine can help
me.
I will keep the group informed as to the weaning off of my current
meds and any new meds I begin to take! 
All the best! 
Rob in New Jersey 
 <<01_tile.jpg>><<01_side.gif>>

Re: [TMIC] Medications

2009-07-16 Thread jrushton

Oh my gosh, I can hardly wait.  I'm just going thru about a week of just
those symptoms.  I finally cried and cried today and I know sometimes it
seems to help.  Jeanne

---Original Message---

From: alle...@aol.com
Date: 7/16/2009 7:25:30 PM
To: Tmic-list@eskimo.com
Subject: Re: [TMIC] Medications

Assuming no problems getting off the Lyrica..Dr. Kerr will prescribe a new
med for the banding (don't ask me the name…I promise to let you know)…he
also said he could prescribe a new med to help with my constant fatigue
(again don't ask me the name).

I will be waiting for this one, anything that can help with the banding.
Glad you are doing okay having cut down on the other meds..Ella

Snoop, Lil Wayne, Lady GaGa -- land the tix you need for this summer's
biggest tours. Tourtracker.com
 <<01_tile.jpg>><<01_side.gif>>

Re: [TMIC] Medications

2009-07-16 Thread Alle111

Assuming no problems getting off the Lyrica..Dr.  Kerr will prescribe a new
med for the banding (don't ask me the name…I promise  to let you know)…he
also said he could prescribe a new med to help with my  constant fatigue
(again don't ask me the name).


I will be waiting for this one, anything that can help  with the banding.
Glad you are doing okay having cut down on the other  meds..Ella






**Snoop, Lil Wayne, Lady GaGa -- land the tix you need for this
summer's biggest tours. Tourtracker.com
(http://www.tourtracker.com/?ncid=emlcntusmusi0007)

Re: [TMIC] Medications

2009-07-16 Thread Catherine

Good Luck Rob I wish you the best!!From: Robert Pall To: Tmic-list@eskimo.comSent: Thursday, July 16, 2009 2:40:07 PMSubject: [TMIC] MedicationsMedications I mentioned previously that I visited Dr. Kerr on 7/1/09 and we decided to adjust my meds. Presently for the most part I take 2 meds for the banding, pins & needles and numbness. They are 4-Aminopyridine and Lyrica. I was taking the 4-aminopyridine (a Potassium channel blocker) twice a day (20 mgs each)…I have been taking this medicine for approx. 8 years…..2 weeks ago I cut my dosage in half and starting tomorrow I will cease taking this med…so far I have not noticed any changes resulting in
the lower dose and I will keep you informed as to any changes I experience going off this med completely. I also take 150 mg of Lyrica 3x per day. Starting today I will cut this down to twice a day for 2 weeks and then once a day for 2 weeks before stopping it altogether. Hopefully I will notice little or no change getting off this medication which I have been on for more than 4 years. Assuming no problems getting off the Lyrica..Dr. Kerr will prescribe a new med for the banding (don't ask me the name…I promise to let you know)…he also said he could prescribe a new med to help with my constant fatigue (again don't ask me the name). As per his advice I am now swimming for an hour at least 3 times a week..it is not doing much for the TM but it is getting my body in better shape. Having had TM for almost 12 years my dreams of a cure seem more and more
distant..so I therefore vow to try and keep my body as healthy as possible and deal with the pain and discomfort as much as medicine can help me. I will keep the group informed as to the weaning off of my current meds and any new meds I begin to take! All the best! Rob in New Jersey

RE: [TMIC] Medications

2009-07-16 Thread

Hi Rob - do you take Baclofen? Next week I am going in the hospital for
a spinal tap trial before I get a Baclofen pump installed. I am wary
about the  whole thing

 

Barney



From: Robert Pall [mailto:rp...@neillsupply.com] 
Sent: Thursday, July 16, 2009 2:40 PM
To: Tmic-list@eskimo.com
Subject: [TMIC] Medications

 

I mentioned previously that I visited Dr. Kerr on 7/1/09 and we
decided to adjust my meds. Presently for the most part I take 2 meds for
the banding, pins & needles and numbness. They are 4-Aminopyridine and
Lyrica. I was taking the 4-aminopyridine (a Potassium channel blocker)
twice a day (20 mgs each)...I have been taking this medicine for approx.
8 years.2 weeks ago I cut my dosage in half and starting tomorrow I
will cease taking this med...so far I have not noticed any changes
resulting in the lower dose and I will keep you informed as to any
changes I experience going off this med completely. I also take 150 mg
of Lyrica 3x per day. Starting today I will cut this down to twice a day
for 2 weeks and then once a day for 2 weeks before stopping it
altogether. Hopefully I will notice little or no change getting off this
medication which I have been on for more than 4 years.

Assuming no problems getting off the Lyrica..Dr. Kerr will
prescribe a new med for the banding (don't ask me the name...I promise
to let you know)...he also said he could prescribe a new med to help
with my constant fatigue (again don't ask me the name).

As per his advice I am now swimming for an hour at least 3 times
a week..it is not doing much for the TM but it is getting  my body in
better shape. Having had TM for almost 12 years my dreams of a cure seem
more and more distant..so I therefore vow to try and keep my body as
healthy as possible and deal with the pain and discomfort as much as
medicine can help me.

I will keep the group informed as to the weaning off of my
current meds and any new meds I begin to take! 

All the best! 
Rob in New Jersey

RE: [TMIC] medications and supplements

2007-01-20 Thread [EMAIL PROTECTED]

' I do feel muscle pain at certain points and to me, that is a good feeling.'
I agree with you here.  I know some people have a lot more pain than I do and 
NEED meds.  But for me, it's a feeling that tells me the numbness is going 
away.  And having lived with migraines for so many years, I'm not that 
sensitive to pain, anyway, as long as I can still think (I can't think w/a 
migraine).  Even the spasms, I don't mind too much, unless they're keeping me 
awake.  I feel like, at least the muscles are working - better than not being 
able to move a muscle at all!
'I also read on here that we shouldnt boost our immune system,'  
I've read that too, but only recently.  Does anyone else have any info on that. 
 I was going to take some supplements that sounded like they might help me, but 
then I read that anyone who has an auto-immune condition shouldn't.  I wonder . 
. .   The first time I read it was on a bottle of melatonin.  My neuro said not 
to take it.  But when I saw the pharmacist that's been advising me, he 
questioned it.  Later, he said he looked it up, and found that the warning was 
based on the case of ONE woman who had reacted to the melatonin.  She had MS 
and was PREGNANT.  Based on that, he assured me I had no need to worry about 
using it if I needed to.
Sally

RE: [TMIC] medications and supplements

2007-01-19 Thread ROBERT COOK

WELL, SAID, LORI.

BULLY !  BULLY !

- Original Message - 
From: Lori Biehler 
To: Jenna Stentz;TM List
Sent: 1/18/2007 6:36:33 PM 
Subject: RE: [TMIC] medications and supplements

Hello to Jenna and the list,
I really hate reading all this crap being spilled about how this cannot work 
for you or how you want to make money. I will tell the list how I feel and how 
I have been doing and what is helping me.
I have been on the list since, 1999 and usually in the background these past 
few years. After Doc died, I really had a hard time with some people on the 
list and that was my problem, not anyone on the lists fault. Just some things I 
had to get over.
I was struck with TM in July of 1998 and I have been a patient of Dr. Kerrs 
since 2000, when his practice began and he agrees 100% with my treatment plan 
for me, not for everyone, but for me. I was on baclofen, neurontin, marinol, 
etc. I think I have tried them all and the side effects from all of them made 
me feel terrible. I am a very lucky lady with my progress and my lack of 
progress. My TM hit at C2 and at T3 and T6. If you were to see me, I look 
totally normal and am able to do so many things that even two years ago I 
couldnt. What do I do? Well, I dont take any meds at all. I hate the nasty 
feeling as I call it, but I prefer to feel that and function. Does smoking a 
bit of weed make it go away? Oh yes, instantly, but I prefer not to live my 
life stoned. Marinol made me stoned, even on the smallest dose, so that was my 
choice and I am not against anyone smoking for any reason, their choice, and 
their body. As for my procreoception and lack of muscle strength, well I!
  exercise and for me, the worse and weaker I feel, the more I work out. I have 
above normal strength now for a woman of my age and it has helped me immensely. 
I read on here all the time to take it easy and let your body heal, well I 
believe that after the initial 6 months or so, working until fatigue is not a 
bad thing. I dont work to fatigue every time I work out, but I do about once a 
month and after a nap, I am fine. I do feel muscle pain at certain points and 
to me, that is a good feeling. I know if I feel muscle soreness on my left, my 
right side worked also. It has worked for and continues to do so. Building 
muscle hurts the able bodied, why should we be different?
I also see a neuro in NJ and after 8 years, my babinsky, not sure if that is 
spelled correctly, is no longer positive and he cant explain it. I have to 
tell you that my neuro here is a Doogie Howser type of man. He is extrememly 
young, and Columbia trained, so he isnt a slouch and he concurs with 
everything I do. I do take B12, and my B12 levels are totally normal, yet after 
a shot, my nerve pain goes almost totally away and medically, there is no 
reason for this. Do I care that there is no reason? No way, as far as I am 
concerned, it helps me that is all that matters.
I also read on here that we shouldnt boost our immune system, well I am not so 
sure about that. Again, this is my opinion and how I live and believe. So many 
of us are idiopathic, I dont know that I have an autoimmune disease because TM 
is a symptom, not a disease. I believe that possibly my immune system was 
whacked, not weak, so I keep mine very strong with the food I eat and dont 
eat. I dont want it weak, I want mine strong and working and this works for 
me. There are other supplements that I take as needed, such as lycine, but I 
wont go into the list on here because we all have different issues and 
different needs.
Jenna, go for it. If it works for you, I want to thank you for telling us all 
about it. I find it extremely interesting and because it helps you, it 
interests me. I prefer anything natural over meds. I do believe that some 
people absolutely need medication, but I also believe that there are many, many 
other things out there that can help us also and we all can make our own 
decisions as to what we need and want and the more information we share with 
each other the better for everyone.
Well, I am done and off my bully pulpit.
Lori

From: Jenna Stentz [mailto:[EMAIL PROTECTED] 
Sent: Thursday, January 18, 2007 12:20 PM
To: Kathryn Keen; TM List
Subject: Re: [TMIC] medications and supplements

Good Afternoon all,

I apologize if you misunderstood.  I was not attempting to sell something.  
That was not my intention.  I have not posted about this since my improvement 
had really been taking off in September, for fear someone would misunderstand.  
My improvement has been so substantial that I felt sharing this could help some 
of you suffering from TM symptoms.

I have not implied this will cure anything, only that my experience with 
glyconutrients is that it provides the necessary nutrients for my body that has 
allowed my cells to properly communicate and my body has begun to repair.  I 
really wanted to share my experience with these technologies since lately there 
have

Re: [TMIC] medications and supplements

2007-01-18 Thread Natalie Boyles

Hi Frank,
These are perna green mussels. They are given to dogs with arthritis and
joint disease.The suppliment is glycoflex. It is just a well know fact among
vets, dog owners, breeders. It works. You need to do a little research. If
you do not know much about dog showing and breeding perhaps that is why you
have never heard of it. It may be out of your range of knowledge.

"Perna contains a natural mineral balance similar to that of the human. It
is made up of 61% protein, 13% carbohydrates, 12%
glycosaminoglycans(GAGs),
5% lipids (including eicosatetraenoic acids, or ETAs), 5% minerals,
and 4% water. Perna mussel also contains
glucosamine, a GAG precursor and one of the building blocks of cartilage.
Glucosamine, GAGs (unbranched chains of complex sugars) and ETAs (a type of
Omega-3 fatty acids) are the compounds in the mussel believed to contribute
to its beneficial effects. ETAs are the key ingredients that help in the
anti-inflammatory activity and thereby the reduction of joint pain. GAGs are
the main components of cartilage and the synovial fluid found in joints."
http://www.peteducation.com/article.cfm?cls=0&cat=1448&articleid=1557
Natalie

On 1/18/07, frank @ franksheldon. com <[EMAIL PROTECTED]> wrote:

> The product they are selling is the very thing that saved my now 12 yr
old
> dog from double hip replacement and the effects of severe arthritis

I don't believe these products are related to glucosamine/chondroitin
sulfate that you, your dog and my girl-friend take.

If anyone can show me a relation between the two, please do.

I get really upset when people take advantage of sick people in order to
earn money.

F

RE: [TMIC] medications and supplements

2007-01-18 Thread Lori Biehler

Hello to Jenna and the list,

I really hate reading all this crap being spilled about how this cannot work
for you or how you want to make money. I will tell the list how I feel and
how I have been doing and what is helping me.

I have been on the list since, 1999 and usually in the background these past
few years. After Doc died, I really had a hard time with some people on the
list and that was my problem, not anyone on the lists fault. Just some
things I had to get over.

I was struck with TM in July of 1998 and I have been a patient of Dr. Kerr's
since 2000, when his practice began and he agrees 100% with my treatment
plan for me, not for everyone, but for me. I was on baclofen, neurontin,
marinol, etc. I think I have tried them all and the side effects from all of
them made me feel terrible. I am a very lucky lady with my progress and my
lack of progress. My TM hit at C2 and at T3 and T6. If you were to see me, I
look totally normal and am able to do so many things that even two years ago
I couldn't. What do I do? Well, I don't take any meds at all. I hate the
nasty feeling as I call it, but I prefer to feel that and function. Does
smoking a bit of weed make it go away? Oh yes, instantly, but I prefer not
to live my life stoned. Marinol made me stoned, even on the smallest dose,
so that was my choice and I am not against anyone smoking for any reason,
their choice, and their body. As for my procreoception and lack of muscle
strength, well I exercise and for me, the worse and weaker I feel, the more
I work out. I have above normal strength now for a woman of my age and it
has helped me immensely. I read on here all the time to take it easy and let
your body heal, well I believe that after the initial 6 months or so,
working until fatigue is not a bad thing. I don't work to fatigue every time
I work out, but I do about once a month and after a nap, I am fine. I do
feel muscle pain at certain points and to me, that is a good feeling. I know
if I feel muscle soreness on my left, my right side worked also. It has
worked for and continues to do so. Building muscle hurts the able bodied,
why should we be different?

I also see a neuro in NJ and after 8 years, my babinsky, not sure if that is
spelled correctly, is no longer positive and he can't explain it. I have to
tell you that my neuro here is a Doogie Howser type of man. He is extrememly
young, and Columbia trained, so he isn't a slouch and he concurs with
everything I do. I do take B12, and my B12 levels are totally normal, yet
after a shot, my nerve pain goes almost totally away and medically, there is
no reason for this. Do I care that there is no reason? No way, as far as I
am concerned, it helps me that is all that matters.

I also read on here that we shouldn't boost our immune system, well I am not
so sure about that. Again, this is my opinion and how I live and believe. So
many of us are idiopathic, I don't know that I have an autoimmune disease
because TM is a symptom, not a disease. I believe that possibly my immune
system was whacked, not weak, so I keep mine very strong with the food I eat
and don't eat. I don't want it weak, I want mine strong and working and this
works for me. There are other supplements that I take as needed, such as
lycine, but I won't go into the list on here because we all have different
issues and different needs.

Jenna, go for it. If it works for you, I want to thank you for telling us
all about it. I find it extremely interesting and because it helps you, it
interests me. I prefer anything natural over meds. I do believe that some
people absolutely need medication, but I also believe that there are many,
many other things out there that can help us also and we all can make our
own decisions as to what we need and want and the more information we share
with each other the better for everyone.

Well, I am done and off my bully pulpit.

Lori

 

  _  

From: Jenna Stentz [mailto:[EMAIL PROTECTED] 
Sent: Thursday, January 18, 2007 12:20 PM
To: Kathryn Keen; TM List
Subject: Re: [TMIC] medications and supplements

 

Good Afternoon all,

 

I apologize if you misunderstood.  I was not attempting to sell something.
That was not my intention.  I have not posted about this since my
improvement had really been taking off in September, for fear someone would
misunderstand.  My improvement has been so substantial that I felt sharing
this could help some of you suffering from TM symptoms.

 

I have not implied this will cure anything, only that my experience with
glyconutrients is that it provides the necessary nutrients for my body that
has allowed my cells to properly communicate and my body has begun to
repair.  I really wanted to share my experience with these technologies
since lately there have been so many posts on the list from people in so
much pain and suffering from the symptoms of TM and MS and I no longer have
these symptoms.  They are not being masked

Re: [TMIC] medications and supplements

>From your reaction, Frank, one would think that Jenna was trying to tell 
>everyone to use glyconutrients to cure them of all their TM symptoms - and to 
>send her the money for it!  I don't think that's at all what she said.  If we 
>are afraid to share ideas with each other, we may all be missing out!
Very often when a supplement 'WORKS' it is because it's supplying something we 
have a need for.  How can one person possibly tell another that something CAN'T 
work for them?  As Rob pointed out, even if the improvement were only 
psychological, if it makes them feel better, is that bad? 
Sally

RE: [TMIC] medications and supplements

2007-01-18 Thread Tracey L. Black

Thank you Rob. I was thinking the same thing. What works for one person
may  not work for others. That is why everyone on this list is on
different medications.  What works for my daughter, may not work for
you, etc. I applaud Jenna for having the courage to be able to tell
everyone about her experience, even though she hasn't been getting a lot
of warm responses. 


Tracey L. Black
Certified Insurance Service Representative
Hockley & O'Donnell Insurance Agency
Phone - 717-334-6741, x 29
Fax - 717-334-3414
 

Thank you for providing information to us. Please beware that no
coverage is bound and no change to your insurance program is confirmed
until verified by a licensed agent during regular business hours. If you
do not hear from us within 1 business day, please re-contact us in case
your information has not been retained.


-Original Message-
From: Robert Pall [mailto:[EMAIL PROTECTED] 
Sent: Thursday, January 18, 2007 5:07 PM
To: [EMAIL PROTECTED]; Jenna Stentz; Kathryn Keen; TM List
Subject: RE: [TMIC] medications and supplements

Frank,
I do not understand your position. It really does not matter
what you thinkthe bottom line is that Jenna found it to be a miracle
drug. She is what this list is all about! We share with each other the
things that make us feel better. I let the group know that Lyrica has
helped me a lot so maybe it will help them as well. I don't really trust
a lot of the supplements on the market, however Jenna's experience has
induced me to try it as well. It may do nothingbut many times a
person taking a placebo (not knowingly) experiences improvementmaybe
it is just mental, but who cares if it helps.
I beg the people on this list to talk about anything that has
improved their conditionto me this is the most important feature of
the list. I will defend anyone who shares their experiences with usI
may not follow their lead, but I will at least consider what they are
saying.
I don't mean to be long winded, but I think the group should
just say thank you to Jenna and leave it at that. What we do or don't do
is up to us! 

Rob in New Jersey 
  

-Original Message-
From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]
Sent: Thursday, January 18, 2007 4:51 PM
To: Jenna Stentz; Kathryn Keen; TM List
Subject: Re: [TMIC] medications and supplements



>   Do you really think I am lying?  It's not who I am.
>
>   I have medical proof of where I was and where I am through 2 of my
Dr's.  I see my neuro at the end of the month and can't wait to see what
my improvement has been from his perspective.  I'll let you know what he
has to say!

Jenna,

I'd love to see your medical proof!  I'd love to communicate with your
doctors.  Are they M.D.s?

At best, I think you may have been taken advantage of.

Just my take on your story.

Sorry

F

RE: [TMIC] medications and supplements

2007-01-18 Thread Robert Pall

Frank,
I do not understand your position. It really does not matter
what you thinkthe bottom line is that Jenna found it to be a miracle
drug. She is what this list is all about! We share with each other the
things that make us feel better. I let the group know that Lyrica has
helped me a lot so maybe it will help them as well. I don't really trust
a lot of the supplements on the market, however Jenna's experience has
induced me to try it as well. It may do nothingbut many times a
person taking a placebo (not knowingly) experiences improvementmaybe
it is just mental, but who cares if it helps.
I beg the people on this list to talk about anything that has
improved their conditionto me this is the most important feature of
the list. I will defend anyone who shares their experiences with usI
may not follow their lead, but I will at least consider what they are
saying.
I don't mean to be long winded, but I think the group should
just say thank you to Jenna and leave it at that. What we do or don't do
is up to us! 

Rob in New Jersey 
  

-Original Message-
From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Thursday, January 18, 2007 4:51 PM
To: Jenna Stentz; Kathryn Keen; TM List
Subject: Re: [TMIC] medications and supplements



>   Do you really think I am lying?  It's not who I am.
>
>   I have medical proof of where I was and where I am through 2 of my
Dr's.  I see my neuro at the end of the month and can't wait to see what
my improvement has been from his perspective.  I'll let you know what he
has to say!

Jenna,

I'd love to see your medical proof!  I'd love to communicate with your
doctors.  Are they M.D.s?

At best, I think you may have been taken advantage of.

Just my take on your story.

Sorry

F

Re: [TMIC] medications and supplements


> The product they are selling is the very thing that saved my now 12 yr old
> dog from double hip replacement and the effects of severe arthritis

I don't believe these products are related to glucosamine/chondroitin sulfate 
that you, your dog and my girl-friend take.

If anyone can show me a relation between the two, please do.

I get really upset when people take advantage of sick people in order to earn 
money.

F

Re: [TMIC] medications and supplements



>   Do you really think I am lying?  It's not who I am.
>
>   I have medical proof of where I was and where I am through 2 of my Dr's.  I 
> see my neuro at the end of the month and can't wait to see what my 
> improvement has been from his perspective.  I'll let you know what he has to 
> say!

Jenna,

I'd love to see your medical proof!  I'd love to communicate with your doctors. 
 Are they M.D.s?

At best, I think you may have been taken advantage of.

Just my take on your story.

Sorry

F

Re: [TMIC] medications and supplements

2007-01-18 Thread Natalie Boyles


The product they are selling is the very thing that saved my now 12 yr old
dog from double hip replacement and the effects of severe arthritis. Dog
people have  been using this kind of supplement for yrs, so have horse
owners. Guess now they have found it works for people too. If you have not
tried it dont knock it.  At least be a bit more polite to the people who
have found it to work for them. This list is getting rude. It must be the
winter blues, as I know we are usually nicer and more open minded.
Natalie B





> Hi -- There are several books out about anti-inflammtories now, and you
can
> read all about them and how they work at this site
>
> http://www.HealthIsRightAroundTheCorner.com , click on Product Info at
the
> side.  and google has many other sites about them. I am taking this for
my
> arthritis, and it really helps me.

Re: [TMIC] medications and supplements

> My improvement has been so substantial that I felt sharing this could help 
> some of you suffering from TM symptoms.
>
>   I have not implied this will cure anything, only that my experience with 
> glyconutrients is that it provides the necessary nutrients for my body that 
> has allowed my cells to properly communicate and my body has begun to repair.

Again, may I tell you all,

This is  BOGUS.

I read Science, every week for the last 30 years.

that issue you refer to doesn't talk about "glyconutrients".

If indeed you had remarkable improvement from "glyconutrients", the original 
disease probably was psychosomatic.  The placebo effect still works.

Sorry to burst your bubble.  Billions of our dollars get spent each year on 
junk like "glyconutrients".  We should not waste our time or money on stuff 
like that.

F

Re: [TMIC] medications and supplements


> Hi -- There are several books out about anti-inflammtories now, and you can 
> read all about them and how they work at this site
> 
> http://www.HealthIsRightAroundTheCorner.com , click on Product Info at the 
> side.  and google has many other sites about them. I am taking this for my 
> arthritis, and it really helps me.


This is totally  BOGUS. 

" anti-inflammtories" don't exist- look the word up in a real dictionary.


 This is a scam to take your money from your pocket or purse.

I'm right about this, this time.

F

Re: [TMIC] medications and supplements

2007-01-18 Thread Natalie Boyles


HI Jenna,
I have heard of using glyconutrients and phytonutrients. I have read they
have helped people with illnesses such as fibro, ms and other auto-immune
problems. There is a lot of literature out there on this - scientific and
medical. You can lead a horse to water but you cannot make him drink, as
they say.

Thanks for having the thougthfulness to share with us. I guess I am trusting
and like to see the good side of most things. But, in this instance I have
also heard of all this before and know of others who have been helped so do
believe you; believe the experts. It is good to be open to new things;
especially when they make you better. You are the winner here, so do not
worry what others think.
Natalie Boyles





On 1/18/07, Jenna Stentz <[EMAIL PROTECTED]> wrote:


Frank,

Do you really think I am lying?  It's not who I am.

I have medical proof of where I was and where I am through 2 of my Dr's.
I see my neuro at the end of the month and can't wait to see what my
improvement has been from his perspective.  I'll let you know what he has to
say!

Jenna



* *

Re: [TMIC] medications and supplements

2007-01-18 Thread Jenna Stentz

Frank,
   
  Do you really think I am lying?  It's not who I am.
   
  I have medical proof of where I was and where I am through 2 of my Dr's.  I 
see my neuro at the end of the month and can't wait to see what my improvement 
has been from his perspective.  I'll let you know what he has to say!
   
  Jenna
   
  

"[EMAIL PROTECTED]" <[EMAIL PROTECTED]> wrote:
  Thank You!!

I knew it was BOGUS just reading the e-mail!

I have sold encyclopedias, vitamins (Shaklee), Mary Kay, and Amway over the 
years. I started in high school selling tupperware. MLM is a great way to make 
money. I have an acquaintance who was single, blind and in a wheelchair when he 
was signed up in Amway, he now earns over $500,000 per year selling Soap.

Soap is different that Miracle Vitamins... It works.

F



 
-
Finding fabulous fares is fun.
Let Yahoo! FareChase search your favorite travel sites to find flight and hotel 
bargains.

Re: [TMIC] medications and supplements

2007-01-18 Thread Jenna Stentz

Good Afternoon all,
   
  I apologize if you misunderstood.  I was not attempting to sell something.  
That was not my intention.  I have not posted about this since my improvement 
had really been taking off in September, for fear someone would misunderstand.  
My improvement has been so substantial that I felt sharing this could help some 
of you suffering from TM symptoms.
   
  I have not implied this will cure anything, only that my experience with 
glyconutrients is that it provides the necessary nutrients for my body that has 
allowed my cells to properly communicate and my body has begun to repair.  I 
really wanted to share my experience with these technologies since lately there 
have been so many posts on the list from people in so much pain and suffering 
from the symptoms of TM and MS and I no longer have these symptoms.  They are 
not being masked by drugs anymore they are actually gone.  I feel like I have 
been given a second chance at life.  I no longer spend 70% of my day in bed.  I 
am enjoying my girls and husband so much.  Life is a joy for me again!
   
  My internal medicine doctor, who I have been seeing for two and a half years, 
is absolutely amazed at the change in me.  My doctor has had me on many 
supplements and was doing acupuncture since I started seeing him.  I did have 
some improvement in some symptoms but my body had never had any real healing.  
In June when I began taking Glyconutrients I was taking six side effect heavy 
medications and I am now down to one, at a half dose, and I am tapering off 
this one as we speak.
   
  I am not knocking other supplements and natural nutrients.  I still take my 
fish oil and I agree this is a very helpful supplement!  I also still take a 
Cranberry & Buchu product from Natures Sunshine to help prevent bladder 
infections.  I used to take 12 a day I now only take 4 due to the helpful 
effects of Glyconutrients.  Our bodies still need the raw materials to perform 
the daily activities and repairs  Glyconutrients does not replace these 
important needs for basic raw materials, exercise, water, etc it only provides 
a missing set of materials that are critical to our bodies ability to properly 
function as intended.
   
  I am really not going to spend a lot of time disputing what the Internet has 
spewed out about glyconutrients, you know they even say Elvis is still alive on 
the Internet as well, but only leave you with this: Most of those negative 
reports are from those who already have a predisposed negative view about these 
products and marketing tools.  Yes, it is network marketing and they are not 
being sly or coy about their product, but due to FDA regulations they CANNOT 
talk to you about specific products only Glyconutrients in general related to 
results.
   
  I do want to mention the ratbags web site as much of their evidence is 
skewed in its view and not balanced, an example is the PDF document referencing 
the tree sourcing by the company.  If viewed with the lens that this is already 
negative you would assume that the use of the fibers in the glyconutrients was 
simple fiber to fill the product, but if you actually looked at the product and 
used and studied where the saccharides come from it you would notice the 
wording about where these fibers are used.  It is a statement about the use of 
the quality fiber used in a completely separate product line, NOT the primary 
glyconutrient supplement (I have been on the primary supplement since June of 
last year).  And furthermore, the saccharides are derived from these types of 
plants in a patented extraction process anyway, so the raw material might look 
a little funny in a press release.
   
  If you are interested in real science about glyconutrients, please look at 
real science journals and web sites  Journal of Anatomy, Embryology and Cell 
Biology devoted and entire issue of their publication Acta Anatomica Vol.161, 
No. 1-4, 1998 publication to the topic of the glycosciences OR Science 
Magazine, a peer-reviewed journal of the American Association for the 
Advancement of Science (AAAS), devoted its 23 March 2001, Volume 291, Issue 
5512 to carbohydrates and glycobiology.  Look at JAMA and many others, these 
will dispel many of the urban legends around glycobiology.
   
  Well if anyone is left reading at this point I just want to say that I felt 
that people on this list could benefit from what I have used and had great 
improvement with.!
Have a great day!  Jenna

Kathryn Keen <[EMAIL PROTECTED]> wrote:  I was interested in the claims made in 
Jenna's post on Glyconutrients, 
(http://www.vitalcarbs4life.com/ http://www.glycoscience.org/) but 
felt it sounded a bit like a sales pitch. I did a web search and found 
many sites selling the same thing with the almost the same wording as 
one another. It sounded a bit like a pyramid selling scheme. None seem 
to actually describe the product they're selling in any details, or give 
prices or ingredient

Re: [TMIC] medications and supplements


> Hi everybody.  You are right about omega-3 oils -- 
> they are a *very* powerful anti-inflammatory. This 


BOGUS

Re: [TMIC] medications and supplements