RE: [TMIC] Hi Everyone

[Butcher, Bernard G (NY80)]

Welcome to the group! I am Barney in NY, Long Island, 56. Tm since 2002,
MS since 2008.

I thought TM & MS happened to only younger people (?)

 

Barney



From: Janice [mailto:jan...@centurytel.net] 
Sent: Tuesday, March 17, 2009 11:43 AM
To: celr...@aol.com; TMIC-LIST@eskimo.com
Subject: Re: [TMIC] Hi Everyone

 

Hi!I am Janice from Missouri.Been a 62- year old TM victim for 2
years and just venturing out on the computer to meet others with TM.
Hope you are doing well.

- Original Message - 

From: celr...@aol.com 

To: TMIC-LIST@eskimo.com 

Sent: Tuesday, March 17, 2009 8:27 AM

Subject: [TMIC] Hi Everyone

 

How is Jude doing.  I have'nt seen any postings for some reason
or other.  I had to subscribe again. I have been concerned about all.
Jane in Splendora Tx

 





Feeling the pinch at the grocery store? Make dinner for $10 or
less  .

RE: [TMIC] MS

[Butcher, Bernard G (NY80)]

Hi Janice - TM - 8/2002 then MS - 2/2008
 
BERNARD BUTCHER
 



From: Janice [mailto:jan...@centurytel.net] 
Sent: Thursday, March 12, 2009 7:04 PM
To: transverse myelitis
Subject: [TMIC] MS


I am curious to know how many of you with TM also are dealing with MS.
I know there are similarities between the two, but I think some of you
may have actually been diagnosed with both.   One first and later on,
the other.
 
Just curious, Janice

RE: [TMIC] Implantable pumps

[Butcher, Bernard G (NY80)]

Good question - I would also like info - - - my neuro wants me to get
one for Baclofen
 
BERNARD BUTCHER
 



From: gor...@earthlink.net [mailto:gor...@earthlink.net] 
Sent: Thursday, March 12, 2009 12:49 PM
To: tmic-list@eskimo.com
Subject: [TMIC] Implantable pumps


I want to get some feedback on the implantable pump (intrathecal) that
provides meds directly into the spine.
 
Any problems with infection?
Cost on Medicare - 80/20  or 100%  ?
Convenient to have, or a pain with upkeep, maintenance, whatever
problems you may have had?
Did it work (regardless of the med, but it would be nice to  know)?
 
I  am looking at pain relief, and probably anti-spasmodic being
delivered via this device.  Thanks for your input.  mt

RE: [TMIC] anyone out there?

[Butcher, Bernard G (NY80)]

Yes, Barney - - New York



From: Gerry Surette [mailto:suret...@sympatico.ca] 
Sent: Tuesday, March 10, 2009 3:35 PM
To: tmic-list@eskimo.com
Subject: [TMIC] anyone out there?

 

 

RE: [TMIC] granddad

[Butcher, Bernard G (NY80)]

Congratulations Wim!  - I may not be too far behind you!

 

Bernie



From: wim from holland [mailto:wim_from_holl...@hotmail.com] 
Sent: Thursday, March 05, 2009 7:31 AM
To: TMIC
Subject: [TMIC] granddad

 

Just a short note from Holland. My oldest son has become a father, so I
am a grandfather now. It felt like I had my own child again in my arms.
She is the most beautifull girl I have ever seen since my own daugther.
Here name is Tess. This little sunshine I like to share it with all of
you. Life is so much nicer to live now, it is more a rich feeling I ever
could inmagine.
 
Wim from Holland
 
 



Ook nieuwsgierig naar de nieuwe Messenger? Download 'm hier
 

RE: [TMIC] RE: tmic-digest Digest V2009 #111

[Butcher, Bernard G (NY80)]

I take up to 28mg of Tizanidine per day, but only in the evening &
during the night. I tried during the day, but it makes me sleepy
 
Barney



From: marieke dufresne [mailto:marieke...@hotmail.com] 
Sent: Friday, February 27, 2009 3:54 AM
To: tmic-list@eskimo.com
Subject: [TMIC] RE: tmic-digest Digest V2009 #111



Amanda, you can take a max dose of 100-120mg a day of Baclofen and/or
ask for Tizanidine (Zanaflex) as well. I take 100mg of Baclofen a day
(20-20-20-40) and 2mg of Zanaflex at night as well. I used to take more
Zanaflex throughout the day too.
Marieke TM @T1 2004












--Forwarded Message Attachment--
Date: Thu, 26 Feb 2009 16:56:29 -0800
From: adis...@yahoo.com
To: tmic-list@eskimo.com
Subject: [TMIC] Muscle Spasms







--Forwarded Message Attachment--
Date: Thu, 26 Feb 2009 19:37:45 -0700
From: cherp...@msn.com
To: jrush...@columbiaenergyllc.com; tmic-list@eskimo.com;
bernie.butc...@.com
Subject: Re: [TMIC] Is anybody there??



 
Linda
 
- Original Message - 

From: Butcher, Bernard G (NY80)
<mailto:bernie.butc...@honeywell.com>  
To: jrushton <mailto:jrush...@columbiaenergyllc.com>  ; tmic
<mailto:tmic-list@eskimo.com>  
Sent: Thursday, February 26, 2009 12:35 PM
Subject: RE: [TMIC] Is anybody there??

yes
 
BERNARD BUTCHER
 



From: jrushton [mailto:jrush...@columbiaenergyllc.com] 
Sent: Thursday, February 26, 2009 12:06 PM
To: tmic
Subject: [TMIC] Is anybody there??


 







--Forwarded Message Attachment--
Date: Thu, 26 Feb 2009 19:47:22 -0800
From: jillybean60...@yahoo.com
To: tmic-list@eskimo.com
Subject: [TMIC] For you MSr's


I know some of us TMr's turned into MSr's and I was just wondering have
any of you experienced that "Lhermette's sign" when you bend your neck
forward and get electric down your legs?  And does that ever go away???
Thanks,
Jill in Chicago
TM '04
MS '09 :(





So many new options, so little time. Windows Live Messenger.
<http://www.microsoft.com/windows/windowslive/products/messenger.aspx>  

RE: [TMIC] Muscle Spasms

[Butcher, Bernard G (NY80)]

yes. I take Tizanidine for twitching at night - it helps alot, and helps
me sleep. My neuro also prescribed 60mg/day baclofen, but I found that
after 30mg for a couple of days, I became like a rag doll, I couldn't
sit up without flopping over & had a hard time standing up! - I do need
baclofen for spasms, I find 15mg/day does it
 
Barney
 



From: Amanda Diskey [mailto:adis...@yahoo.com] 
Sent: Thursday, February 26, 2009 7:56 PM
To: tmic-list@eskimo.com
Subject: [TMIC] Muscle Spasms


My doc has me taking 20mgs 3x's/day of baclofen for muscle spasms, they
still keep me up half the night my legs shake so bad and I am staying
pretty tight even though I stretch twice a day. Does anyone have any
suggestions? Is there something else I could take or do? I am miserable!
 
Amanda


--- On Thu, 2/26/09, tmic-digest-requ...@eskimo.com
 wrote:


From: tmic-digest-requ...@eskimo.com

Subject: tmic-digest Digest V2009 #110
To: tmic-dig...@eskimo.com
Date: Thursday, February 26, 2009, 2:06 PM


tmic-digest Digest  Volume 2009 :
Issue 110

Today's Topics:
  RE: [TMIC] ANOTHER QUESTION   [ "Patricia Cooley"
 ]
  [TMIC] Is anybody there?? [ "jrushton"
mailto:montzma...@aol.com] 
Sent: Sunday, February 22, 2009 4:41 PM
To: patticoo...@wi.rr.com
Subject: Re: [TMIC] ANOTHER QUESTION

  

PATTI, I TOOK IMURAN 50 MGS A DAY FOR FOUR YEARS. IT MADE MY
HAIR FALL OUT A BIT. IT DID NOTHING TO MY NAILS.

THEN IT STARTED MAKING MY HAIR FALL OUT, I GOT OFF THE DRUG. I
DO NOT HAVE WHAT YOU AND LINDA HAVE.

I AM VERY VAIN. YES WE SHOULD WANT TO LOOK NICE.ITS A AUTI
IMMUNE DEPRESSANT WHICH I KNOW YOU KNOW. I WOULD STOP IT. I DID WITHOUT
ASKING MY DOCTORS.

MY HAIR CAME BACK VERY FAST AND THICKER. I HAVE NOT BEEN ON A
AUTO IMMUNE DRUG IN OVER 2 YEARS I AM DOING GREAT, THANK THE LORD.

YOU ASK YOUR DOCTOR ABOUT ALL THE SIDE EFFECTS. WHERE I LIVE FOR
CERTAIN DRUGS WE HAVE TO SIGN THE RELEASE FOR THESE DRUGS HAVE MANY SIDE
EFFECTS.

IN THE BAG MY SCRIPTS COME IN EVERY DRUG IS DESCRIBED AND IT
TELLS YOU ALL ABOUT IT. 

BEST WISHES , TIAD PAM

  




Need a job? Find an employment agency near you
 . 
My dosage was 150mgs per day for over two years.  I had no
significant hair loss and only stopped the treatment because I failed on
it and continued to have debilitating attacks.
 
Gracie (Devic's NMO since 2005)
 

RE: [TMIC] Is anybody there??

[Butcher, Bernard G (NY80)]

yes
 
BERNARD BUTCHER
 



From: jrushton [mailto:jrush...@columbiaenergyllc.com] 
Sent: Thursday, February 26, 2009 12:06 PM
To: tmic
Subject: [TMIC] Is anybody there??


 

<>

RE: [TMIC] Haven't gotten any e-mails

[Butcher, Bernard G (NY80)]

Hi Jill - my neuro started giving me prednisone in 12/05 after a spinal
tap. Pills at first, for one month. It worked great, I was able to take
long walks with just a cane. After that, she put me on IV prednisone,
3,000mg every three months. I was ill after each dose, sometimes so bad
I was in bed for two days. Then, I felt better, but not as good as the
first time. She said that the steroids reduce inflammation & therefore
help reduce damage. This continued until 2/08, when I was diagnosed with
MS, now taking Copaxone injections daily and no more prednisone.

 

Barney



From: L T CHERPESKI [mailto:cherp...@msn.com] 
Sent: Saturday, February 21, 2009 10:11 PM
To: tmic-list@eskimo.com; Jill Z
Subject: Re: [TMIC] Haven't gotten any e-mails

 

I'm here Jill  - but there are just a few posts ???

 

Linda in Eagle, ID

- Original Message - 

From: Jill Z   

To: tmic-list@eskimo.com 

Sent: Saturday, February 21, 2009 1:50 PM

Subject: [TMIC] Haven't gotten any e-mails

 

Is anyone out there?  I'm weaning off my prednisone now and had a few
questions.

Thanks,

Jill

 

RE: [TMIC] T-2 Lesions

[Butcher, Bernard G (NY80)]

You're right Gracie, they (my neuros) called it TM for 5 years, then I
had a lesion in my optic nerve, causing me to see double. Then it became
MS

 

Bernie



From: Grace M. [mailto:grace...@gmail.com] 
Sent: Thursday, February 12, 2009 9:39 AM
To: fr...@franksheldon.com
Cc: tmic-list@eskimo.com
Subject: Re: [TMIC] T-2 Lesions

 

Agreed Frank---a high probability.  That being said, there are a
myriad of diseases/disorders that cause brain lesions, including NMO in
up to sixty per cent of all patients. (Though not in a pattern
consistent with MS)  The MS diagnosis is one of *rule in, rule out*.
been there done that---prayed for MS, unfortunately it wasn't to be the
case.  

 

XO  Gracie

 

 

RE: [TMIC] Tuesday am

[Butcher, Bernard G (NY80)]

Welcome home Kim! I know what it feels like to "get out" my limit is 10
days in the hospital, then I start tying sheets together

 

Barney



From: kimr1...@bellsouth.net [mailto:kimr1...@bellsouth.net] 
Sent: Wednesday, January 28, 2009 2:27 PM
To: TMIC; Trudy Ogilvie; Catherine; judith hoops
Subject: Re: [TMIC] Tuesday am

 

Here I am  Came home last night and tell you what HOME feels
great!!! 

 

Feel good have more energy than I thought I was going to of course I
know to take it easy have been in bed all day resting and needed to sit
up for a little while. Hurts to talk where the incision is but guess
that will pass in time. As for the TM, still have it. But hey at least
my neck that I didn't know I had a problem with is fixed! LOL!!

 I just started a new job six months ago and found out I don't have
disability so looks like the six week recovery will be bumped up to five
days. They told me not to lift anything over 5 lbs for the next few
weeks and my wheel chair weighs 22 so we have it arranged that when I
get to work in the morning someone will come out and help me unload it
and load back up in the evening. All I do is sit at a desk all day
anyways so as would be the same as sitting at the house, I know to ask
for help if I need it and let pride take a back seat for now. 

 

I would like to thank all my TM family for the one on one emails and
encouragement,. It's amazing to have such a wonderful support system and
to know others out there care so much. Jenna, you have been a life line
to me and will never know how much it meant for you to take the time and
come sit with me in the hospital and stay with me during surgery and
recovery. Words can not express my thanks! Oh and I do have your
sweater, will get it to ya as soon as I can. 

 

So all and all life is good, no complaints weather here in Atlanta is
much better than up north right now, you guys in the north try to stay
warm and safe

 

Kim

-- Original message from Trudy Ogilvie
: -- 

And me too!!!  Lots of uplifting news this weekJude I can't
get out to my mailbox due to this snowstorm that has turned into an icy
nightmare but you are in my thoughts and prayers...  Kim you're doing
awesome, keep us informed and sounds like Patti made it thru her first
day back with flying colors. There will always be obstacles for us to
face but in the end they make us stronger! 

Trudy

On Tue, Jan 27, 2009 at 12:59 PM, Catherine 
wrote:

I second that!  Catherine

 

 

 

 





From: jrushton 
To: Patricia Cooley ; tmic

Sent: Tuesday, January 27, 2009 9:58:24 AM 


Subject: RE: [TMIC] Tuesday am

 

I am so very thankful for you doing better, dear Jude, for you Kim
getting to your doctor and thru your surgery so well, and for you Patti,
for this new adventure you are taking.  I am truly thankful that you are
strong enough to even do the part time let alone tackle the full time.
I am blessed for all of you, every one of you TM'ers that are such a
strong part of my life.  I thank God for each and every one of you.
Jeanne in Dayton

 

---Original Message---

 

From: Patricia Cooley  

Date: 1/27/2009 10:01:42 AM

To: kimr1...@bellsouth.net;  tmic-list@eskimo.com

Subject: RE: [TMIC] Tuesday am

 

KIM - I AM SO GLAD YOUR SURGERY IS FINALLY OVER.  WE WERE ALL THINKING
AND PRAYING FOR YOU THAT ALL GOES WELL.  I HAD THE COMPRESSION WRAPS
WHEN I FIRST WAS IN THE HOSPITAL.  THEY FELT GREAT.  I WISH I HAD THEM
AT HOME.

 

TODAY I AM A LITTLE NERVOUS AS I AM GOING BACK TO WORK TODAY FOR THE
FIRST TIME IN 7 MONTHS.  I WAS ONLY WORKING PART TIME (2 AFTERNOONS A
WEEK) AT THE SWITCHBOARD IN OUR LOCAL MEDICAL CLINIC, BUT I ENJOYED
GETTING OUT WITH PEOPLE.  I HOPE I HAVE THE STRENGTH TO LAST ALL
AFTERNOON.

 

I HOPE YOU FINALLY GET A FULL NIGHTS SLEEP VERY SOON.  TAKE CARE.

 

PATTI - WISCONSIN

From: kimr1...@bellsouth.net [mailto:kimr1...@bellsouth.net] 
Sent: Tuesday, January 27, 2009 7:07 AM
To: tmic-list@eskimo.com
Subject: [TMIC] Tuesday am

 

Morning, I can not talk; my neck is so sore and hurts. Well made it thru
surgery, had no clue it was going to hurt so much later. I have a drain
tube coming out of my neck, once they check it they might let me go home
today. Need lots of pain meds right now!!

 

They have these compression wraps around my legs that squeeze and
release my legs from ankles to thighs. To stop blood clots and let me
tell you they feel great!! Its likes having leg messages now this is
something I want to take home!

They are going to set me up with some physical therapy; I have some
weakness in my arms which I don't need with the wheel chair walker. 

 

Still working on 1 to 4 hours sleep so having  a hard time with
consternation and memory issues, I have to write eve

RE: [TMIC] Today Show

[Butcher, Bernard G (NY80)]

Hi Trudy - I saw this show this morning - it's a WalkAide -  I was
fitted for one & now it's up to my insurance - it costs about $5,000.00.
It worked for me, but I won't be able to climb any mountains like she
was. All it did was lift my toes, so I won't need my AFO brace any more.
There is also an exercise mode where I can sit & it will trigger every 4
seconds to build leg muscles.

 

Barney in NY praying for early spring



From: Trudy Ogilvie [mailto:mother...@gmail.com] 
Sent: Tuesday, January 27, 2009 1:06 PM
To: Tmic-list@eskimo.com
Subject: [TMIC] Today Show

 

Please take a look and tell me what you think??  Click on the woman with
the MS story to tell..

 

 

http://today.msnbc.msn.com/

RE: [TMIC] Too Cold

[Butcher, Bernard G (NY80)]

Hi Jude - I am always cold. But in the summer here in NY the heat gets
to me - my comfort zone seems to be 74 - 79. Fortunately the room I
sleep in (also in small hospital bed) - is the warmest in the house. To
combat cold - my hands are ALWAYS cold - I use hand warmers - there're
little bags that get hot when you take them out of their wrapper, and
they stay hot for 10 hours. I use one at a time & switch between hands. 

 

Barney



From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Saturday, November 29, 2008 1:40 AM
To: TMIC-LIST@eskimo.com
Subject: [TMIC] Too Cold

 

Hi All,

 

Is anyone else out there suffering from that bone-chilling cold that
settles deeply into your bones and nothing you do helps to warm you up?

 

I began to get cold earlier in the evening and have had Dave put mega
blankets on me until they are so heavy I can barely lift them.  I now
have a queen sized silk blanket doubled on top of all of my other covers
on my small hospital bed.

 

This kind of cold came with the Transverse Myelitis and I don't believe
it will ever go away.  At least there is no kind of medication to warm
me up that I know of.  Does anyone out there have a clue?

 

I know that some of you have also felt this chilling cold.  What do you
do to combat it?  It is ridiculous the lengths I go to in order to be
able to sleep, but am so uncomfortable that I can't.

 

At least I am tired enough to give it a go...

Jude

 







Life should be easier. So should your homepage. Try the NEW AOL.com
 .

RE: [TMIC] Re: tmic-digest Digest V2008 #431

[Butcher, Bernard G (NY80)]

Hi Jude - when I was diagnosed with TM, my neuros saw lesions on
my spine - then (a year ago) I started seeing double - MRI showed lesion
on my optic nerve - - boom . . .  MS.

 
Barney
 



From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Monday, November 24, 2008 2:29 PM
To: [EMAIL PROTECTED]; TMIC-LIST@eskimo.com
Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431


Good.  I hate to be spreading wrong information to others with TM.  This
is the only site I email to because of the fear of becoming confused
about illnesses.  My brain is simply not what is used to be.
 
You know what?  I used to be "Mensa" material but now I become confused
so easily and am so forgetful that I hate to impart information to
anyone.  Is it because of the disease or the drugs I take to combat the
TM?
 
Love to all,
Jude
 
In a message dated 11/24/2008 2:21:21 P.M. Eastern Standard Time,
[EMAIL PROTECTED] writes:


That is the way I understand it too Jude.  My sister who is 3
yrs younger than me has MS.  It is the one that progresses slowly but
everytime she has and MRI she has more lesions on both spine and brain.

 
Heather in Calgary 

- Original Message - 
From: [EMAIL PROTECTED] 
To: [EMAIL PROTECTED] ; tmic-list@eskimo.com 
Sent: Monday, November 24, 2008 12:06 PM
Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431

Hello All,
 
It has been my understanding that with TM one must have lesions on the
spine but not on the brain.  If one has lesions on the brain it is
indicative of MS.
 
Am I misinformed regarding this information?  
 
God Bless You,
Jude
 
In a message dated 11/24/2008 8:34:00 A.M. Eastern Standard Time,
[EMAIL PROTECTED] writes:

Frank,
They were never able to locate a lesion on my spine and from
what I have read on the message forums this is true for alot of people.


I had mutiple MRIs done both with and without contrast.
Lynne


--- On Sun, 11/23/08, [EMAIL PROTECTED]
<[EMAIL PROTECTED]> wrote:

> From: [EMAIL PROTECTED] <[EMAIL PROTECTED]>
> Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431
> To: "jrushton" <[EMAIL PROTECTED]>,
[EMAIL PROTECTED], "TMIC" 
> Date: Sunday, November 23, 2008, 4:30 PM
> >   i have a question, has anyone else been told that
> they don't have > lesions on their spine? my neuro
> says mine is just swelling from c6-t3 > and t9-t10., so
> what does that mean? 
> 
> What does  swelling from c6-t3 > and t9-t10 mean??
> 
> Did you have an MRI with and with out gadolium
> (enhansement)?
> 
> F


  









One site has it all. Your email accounts, your social
networks, and the things you love. Try the new AOL.com
  today!






One site has it all. Your email accounts, your social networks, and the
things you love. Try the new AOL.com
  today!

RE: [TMIC] Re: tmic-digest Digest V2008 #431

[Butcher, Bernard G (NY80)]

Thanks Heather - I'll try it.
I'll try anything!
 
Barney
 



From: Pieter and Heather [mailto:[EMAIL PROTECTED] 
Sent: Friday, November 21, 2008 1:53 PM
To: Butcher, Bernard G (NY80); jrushton; [EMAIL PROTECTED]; tmic
Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431


Barney,
 
I'm using the WalkAide since mid May.  I'm in a 3 (three) year Clinical
Trial here in Alberta.  Not everyone is able to use it depending on if
they can find the pathway for the Peroneal nerve.  I was one of 3 out of
13 people they had tested when I first got it.  Out of the 13 at the
clinic at that time only 3 of us turned out to be eligible.  There are
probably more now.  It took a while for me to get used to it.  At first
it stabbed me like a darning needle. But eventually they found the right
spot and it feels like a river of sensation going from the point that
electrode contacts the nerve down my leg to my toes.  It lifts my toes.
The biggest advantage I have found is that I do not 'hip-hike' like I
did and my leg is much less tired by the end of the day.  I know that in
the Orthotist Clinic that I go to they had 2 people with MS, 2 stroke
patients and 2 people with TM at one point.  Worth a try especially if
it is covered by your insurance or something else.  I know that I only
had to pay $500. but the price would be about $4500. if I had to pay for
it myself.  When I was 'hip-hiking' so much I found I was getting a
cortisone shot in my hip every 6 months to alleviate the pain.
 
Heather in Calgary 

- Original Message - 
From: Butcher, Bernard G (NY80)
<mailto:[EMAIL PROTECTED]>  
To: jrushton <mailto:[EMAIL PROTECTED]>  ;
[EMAIL PROTECTED] ; tmic <mailto:tmic-list@eskimo.com>  
Sent: Friday, November 21, 2008 6:22 AM
Subject: RE: [TMIC] Re: tmic-digest Digest V2008 #431

Hi Jeanne - congrats on your progress! - it is also my goal to
walk without walker. I hope I can but I was diagnosed with MS after TM.
My neuro wants me to go for an evaluation for "walk aide" - a gadget you
strap to your calf to jolt you when you are trying to take a step, and
also a new med coming out next year - we'll see. First I have to get off
my butt & exercise more but in the evening I am too pooped from working
all day & can't do it in the morning because then I'll be too pooped at
work!
 
Barney
 



From: jrushton [mailto:[EMAIL PROTECTED] 
Sent: Thursday, November 20, 2008 7:32 PM
To: [EMAIL PROTECTED]; tmic
Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431


Amanda, you couldn't have come to a better group.  We go clear
across the chart in where we are in our post TM onset so you will have a
lot of support.  I don't think anyone really knows where each person
will be with their TM.  Some do improve right away, some improve
partially from the onset, others take longer and then sadly, a few where
there aren't many changes from the onset.  

I was totally paralyzed from the chest down and after the first
week was able to move my left toe.  After three weeks, I was able to sit
up and move my legs but still could not walk but was determined to get
better.  With prayer and PT I progressed from a wheelchair full time, to
a walker and wheelchair, to a wheelchair with shopping and traveling,
and now can walk, drive, and get around pretty darn well from where I
started.  I walk like a drunk and always take a cane if I'm going
anywhere but by gosh, I can do it!!!  I still don't have the feeling
back from the chest down even tho I have sensation here and there.
There are others who have come a whole lot further than I have.  Each
case is different. 
 
Please take care and although I wish this hadn't happened to
you, you are welcome as sunshine to this new family of supporters!
 
Jeanne in Dayton, WA

RE: [TMIC] Re: tmic-digest Digest V2008 #431

[Butcher, Bernard G (NY80)]

My neuro said that my insurance (United Health Care) does cover it,
we'll see how much. Yes, I am working, for Honeywell. They have even set
me up to work from home a couple of days per week - especially good when
the nasty weather hits. Stamina is a real problem for me, I poop out
after lunch usually, I gotta push it. In the evenings I just flop.
 
Barney
 



From: jrushton [mailto:[EMAIL PROTECTED] 
Sent: Friday, November 21, 2008 10:41 AM
To: Butcher, Bernard G (NY80); tmic
Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431


Hi, friend!  I tried that walk aide out and the concept is really good
but it was just too expensive ($4,000) and our ins. wouldn't cover it.
Trying it out I could see how it did work and that was from setting the
timing of the elec. jolt into the muscle that makes you able to take a
real step.  The jolt was surprising at first but not that bad especially
knowing and seeing how it could help you not drag your foot.  Good luck
on that!  I'll be anxious to hear how it works out for you!!!
 
I admire the fact that you are working!  I tried but just couldn't do
it.  I just plain didn't have the stamina to do a good job.  The clinic
was so wonderful and would have let me continue but it wasn't fair to
them or the staff.  It was the right decision to retire.
 
Please take care!!  Jeanne 

RE: [TMIC] Re: tmic-digest Digest V2008 #431

[Butcher, Bernard G (NY80)]

Hi Jeanne - congrats on your progress! - it is also my goal to walk
without walker. I hope I can but I was diagnosed with MS after TM. My
neuro wants me to go for an evaluation for "walk aide" - a gadget you
strap to your calf to jolt you when you are trying to take a step, and
also a new med coming out next year - we'll see. First I have to get off
my butt & exercise more but in the evening I am too pooped from working
all day & can't do it in the morning because then I'll be too pooped at
work!
 
Barney
 



From: jrushton [mailto:[EMAIL PROTECTED] 
Sent: Thursday, November 20, 2008 7:32 PM
To: [EMAIL PROTECTED]; tmic
Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431


Amanda, you couldn't have come to a better group.  We go clear across
the chart in where we are in our post TM onset so you will have a lot of
support.  I don't think anyone really knows where each person will be
with their TM.  Some do improve right away, some improve partially from
the onset, others take longer and then sadly, a few where there aren't
many changes from the onset.  

I was totally paralyzed from the chest down and after the first week was
able to move my left toe.  After three weeks, I was able to sit up and
move my legs but still could not walk but was determined to get better.
With prayer and PT I progressed from a wheelchair full time, to a walker
and wheelchair, to a wheelchair with shopping and traveling, and now can
walk, drive, and get around pretty darn well from where I started.  I
walk like a drunk and always take a cane if I'm going anywhere but by
gosh, I can do it!!!  I still don't have the feeling back from the chest
down even tho I have sensation here and there.  There are others who
have come a whole lot further than I have.  Each case is different. 
 
Please take care and although I wish this hadn't happened to you, you
are welcome as sunshine to this new family of supporters!
 
Jeanne in Dayton, WA

RE: [TMIC] Looking for information

[Butcher, Bernard G (NY80)]

Hi Patti - I too need a walker to get around  don't go to supermarkets
any more - here in NY they are all huge! - I bought an electric
wheelchair on Ebay for $500.00 - I love it, but now I have to get a
vehicle to transport it
 
BERNARD BUTCHER
 



From: Patricia Cooley [mailto:[EMAIL PROTECTED] 
Sent: Tuesday, November 18, 2008 12:50 PM
To: tmic-list@eskimo.com
Subject: [TMIC] Looking for information



Hello All:

 

I need some assistance.  First I am able to walk with a walker, but not
too far.  When I go shopping most of the large stores have electric
carts which really come in handy.  However, there are some smaller
stores that either don't have the electric carts or have regular wheel
chairs.  With the regular wheel chairs I need to have someone with me
and do the pushing and when they do that they can't also handle a
shopping cart.  So, my questions is that I am thinking of getting a
3-wheeled scooter for the occasions when an electric cart is not
available.  Do any of you have experience with them and what are your
recommendations as to make, where to purchase,  etc.  It involves a lot
of money and I don't want to make a big mistake.

 

Right now, I am in the process of seeing if my insurance won't pay for a
part of it.  If it would, it would be a big help financially.

 

Thanks for any help you can give me.

 

Patti in Wisconsin

RE: [TMIC] Question from Randy-Solu-Medrol

[Butcher, Bernard G (NY80)]

Hi Jenna - yes it is bad for your body - I took a bone density scan test
& flunked - now I have osteo penia.

 

Bernie



From: Jenna [mailto:[EMAIL PROTECTED] 
Sent: Friday, November 14, 2008 8:47 AM
To: [EMAIL PROTECTED]; Butcher, Bernard G (NY80);
TMIC-LIST@eskimo.com
Subject: Re: [TMIC] Question from Randy-Solu-Medrol

 

Jude, 

Most of the time when they give you Solu-Medrol for MS or TM you get
1000mgs a day.  The dose pac's are much lower dose of steroids.  

I have such bad reactions to it that I had to be put in the hospital
each time I needed it.  Instead of doing 1000mg once a day, they have to
spread it out and do 250mg every 6 hours.  It makes me very sick and I
spend 6 days in the hospital.  Then come home for a day or two and then
go back for a day, because my blood sugar is so messed up and has
problems readjusting. Spend a day and get things settled down.  I am
always very sick for two weeks following the Solu-Medrol.  It takes 9
weeks or so before I really start feeling good again.  Durning all this
time I can't drive and spend most of the time in bed.  And am very
grouchy <http://mail.yimg.com/a/i/mesg/tsmileys2/02.gif> 

Thank goodness I have not had to that for almost 3 years now.  I am so
very blessed and happy about that.  I have a friend here that did the
Solu-Medrol for the first time and was asking me if I ever had a relaps
again would I do the steroids again.  And I told her as bad as it is on
my body, yes I would because it did help so much.  As Frank said in an
e-mail there are some bad permanet  side effects.  It is something you
really need to talk about with your Dr.

 

Jenna

 

 



From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]>
To: [EMAIL PROTECTED]; TMIC-LIST@eskimo.com
Sent: Friday, November 14, 2008 3:39:05 AM
Subject: Re: [TMIC] Question from Randy

Hello Bernie

 

It has been ages since we have heard from you.  What has been going on
in your life?  You always have such interesting stories to tell and new
ideas you say we ought to try.

 

What is the big idea about Solu-Medrol?  What kind of positive effects
do get from it?  Isn't is comparable to a "dose-pack"?  How bad is the
pain on the fourth day?  I figure that it must be worth it.

 

God Bless,

Jude

 

In a message dated 11/12/2008 2:26:12 P.M. Eastern Standard Time,
[EMAIL PROTECTED] writes:

Diagnosed with TM in 2002, MS in 2008. But I was getting it
before the
MS diagnosis. Last time I got it was 9/08, due next month. The
sick
effect goes away completely in a week, then I feel better.
Overall, I
don't know if it does anything, but it is supposed to reduce
inflammation in my spinal cord and nerve myelin, and therefore
prevent
damage.

Bernie


-Original Message-
From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Wednesday, November 12, 2008 1:55 PM
To: Butcher; Butcher, Bernard G (NY80); Jenna; TMIC
Subject: Re: RE: [TMIC] Question from Randy


> Yes, I get this infusion every 3 months, 1G/day for 3 days.
It's
> prednisone. For me, I get a bit sick after the fourth day, but
my
neuro
> says that that is not the norm - just me. After that I feel
pretty
good,
> stronger.

Bernie,

That'sa lot of medication!! 

For what disease do you get that much Solu-Medro??

Have you started to get the side effects?

Good Luck

F







Get the Moviefone Toolbar
<http://pr.atwola.com/promoclk/10075x1212774565x1200812037/aol?redir
=http://toolbar.aol.com/moviefone/download.html?ncid=emlcntusdown000
1> . Showtimes, theaters, movie news & more!

 

RE: [TMIC] Question from Randy

[Butcher, Bernard G (NY80)]

Hi Jude - Great to hear from you - hope & pray you are better. I have
posted from time to time, but I don't know if I always get through.

My life (with Mr. MS) now is: get up, go to work (using walker), come
home (totally exhausted) eat, then bed, & do it all again. On weekends,
rest up as much as possible for next week.
The positive effects are that I feel better for a while, a month or two,
then after 3 months get another dose. I also do it because my neuro
recommends it (?) I think it's worth it. Plus up until now, I get it
done at home. 

What's a "dose pack"?

After the fourth day, I have no pain really, just ill, like, flu-ish - I
take two naps per day for two or three days, then I begin to come back
to "normal"

 

Bernie



From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Friday, November 14, 2008 3:39 AM
To: Butcher, Bernard G (NY80); TMIC-LIST@eskimo.com
Subject: Re: [TMIC] Question from Randy

 

Hello Bernie

 

It has been ages since we have heard from you.  What has been going on
in your life?  You always have such interesting stories to tell and new
ideas you say we ought to try.

 

What is the big idea about Solu-Medrol?  What kind of positive effects
do get from it?  Isn't is comparable to a "dose-pack"?  How bad is the
pain on the fourth day?  I figure that it must be worth it.

 

God Bless,

Jude

 

In a message dated 11/12/2008 2:26:12 P.M. Eastern Standard Time,
[EMAIL PROTECTED] writes:

Diagnosed with TM in 2002, MS in 2008. But I was getting it
before the
MS diagnosis. Last time I got it was 9/08, due next month. The
sick
effect goes away completely in a week, then I feel better.
Overall, I
don't know if it does anything, but it is supposed to reduce
inflammation in my spinal cord and nerve myelin, and therefore
prevent
damage.

Bernie


-Original Message-
From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Wednesday, November 12, 2008 1:55 PM
To: Butcher; Butcher, Bernard G (NY80); Jenna; TMIC
Subject: Re: RE: [TMIC] Question from Randy


> Yes, I get this infusion every 3 months, 1G/day for 3 days.
It's
> prednisone. For me, I get a bit sick after the fourth day, but
my
neuro
> says that that is not the norm - just me. After that I feel
pretty
good,
> stronger.

Bernie,

That'sa lot of medication!! 

For what disease do you get that much Solu-Medro??

Have you started to get the side effects?

Good Luck

F







Get the Moviefone Toolbar
<http://pr.atwola.com/promoclk/10075x1212774565x1200812037/aol?redir
=http://toolbar.aol.com/moviefone/download.html?ncid=emlcntusdown000
1> . Showtimes, theaters, movie news & more!

RE: RE: [TMIC] Question from Randy

[Butcher, Bernard G (NY80)]

Diagnosed with TM in 2002, MS in 2008. But I was getting it before the
MS diagnosis. Last time I got it was 9/08, due next month. The sick
effect goes away completely in a week, then I feel better. Overall, I
don't know if it does anything, but it is supposed to reduce
inflammation in my spinal cord and nerve myelin, and therefore prevent
damage.

Bernie


-Original Message-
From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Wednesday, November 12, 2008 1:55 PM
To: Butcher; Butcher, Bernard G (NY80); Jenna; TMIC
Subject: Re: RE: [TMIC] Question from Randy


> Yes, I get this infusion every 3 months, 1G/day for 3 days. It's
> prednisone. For me, I get a bit sick after the fourth day, but my
neuro
> says that that is not the norm - just me. After that I feel pretty
good,
> stronger.

Bernie,

That'sa lot of medication!! 

 For what disease do you get that much Solu-Medro??

Have you started to get the side effects?

Good Luck

F

RE: [TMIC] Question from Randy

[Butcher, Bernard G (NY80)]

Yes, I get this infusion every 3 months, 1G/day for 3 days. It's
prednisone. For me, I get a bit sick after the fourth day, but my neuro
says that that is not the norm - just me. After that I feel pretty good,
stronger.

 

Bernie



From: Jenna [mailto:[EMAIL PROTECTED] 
Sent: Wednesday, November 12, 2008 1:19 PM
To: TMIC; Kim; Martha Fleming; Betty
Subject: [TMIC] Question from Randy

 

Randy  asked me to forward this.  Anyone what to tell him their
experience with Solu-Medrol? 

 

Jenna

 

[EMAIL PROTECTED]


Ok u might forward this to group. I have no forward ability on
blackberry. They are treating me with IV methyprnisolone (solu-medrol)
and added tergetal for the facial pain. Could someone look up, explain
or add personal experiences from the methyprnisolone. 

Sent from my Verizon Wireless BlackBerry



From: Jenna <[EMAIL PROTECTED]>
Date: Wed, 12 Nov 2008 05:39:18 -0800 (PST)
To: <[EMAIL PROTECTED]>
Subject: Re: October TM meeting

Very good Randy!  Hopefully the new ENT will have good news too!  Take
care and keep me updated.

 

Jenna

 

 



From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]>
To: Jenna <[EMAIL PROTECTED]>
Sent: Wednesday, November 12, 2008 9:01:11 AM
Subject: Re: October TM meeting

Great news the doc says that it isn't ms. The facial nerves are inflamed
but the brain stem is ok. Theyu don't knw the cause but believe it is an
ear infection that attacked the nervous system. But it isn't a nuro
problem per say. The steriods seem to be working. They also have a
better ENT going to look at me. They say that I will probably have to
have surgery on inner ear. But that is left up to the ENT. 

Sent from my Verizon Wireless BlackBerry



From: Jenna <[EMAIL PROTECTED]>
Date: Tue, 11 Nov 2008 15:56:05 -0800 (PST)
To: <[EMAIL PROTECTED]>
Subject: Re: October TM meeting

Wow what a day.  Well I am praying for you and hoping you will recover
quickly.

 

Jenna

 

 



From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]>
To: Jenna <[EMAIL PROTECTED]>
Sent: Tuesday, November 11, 2008 7:43:57 PM
Subject: Re: October TM meeting

I had two lumbar punctures. The first got nothing. The second was not
much better and the guy hit a nerve TWICE that sent a shock to my
testees. It was horrific. They did some evoke potential tests where they
electricute ur hands and ankles. I had another mri. They did some visual
and auditory tests. 

Sent from my Verizon Wireless BlackBerry



From: Jenna <[EMAIL PROTECTED]>
Date: Tue, 11 Nov 2008 15:36:30 -0800 (PST)
To: <[EMAIL PROTECTED]>
Subject: Re: October TM meeting

How are you feeling?  What are they doing for you??

 

Jenna

 

 



From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]>
To: Jenna <[EMAIL PROTECTED]>
Sent: Tuesday, November 11, 2008 7:33:59 PM
Subject: Re: October TM meeting

Sunday is best for me. I should b out. I thnk the girls said sunday. 

Sent from my Verizon Wireless BlackBerry



From: Jenna <[EMAIL PROTECTED]>
Date: Tue, 11 Nov 2008 15:28:19 -0800 (PST)
To: <[EMAIL PROTECTED]>; Susan<[EMAIL PROTECTED]>;
<[EMAIL PROTECTED]>
CC: Martha Fleming<[EMAIL PROTECTED]>; Betty
Budnek<[EMAIL PROTECTED]>; RANDY RANKIN<[EMAIL PROTECTED]>
Subject: Re: October TM meeting

I can meet on Saturday or Sunday just let me know.

 

Jenna

 

 



From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]>
To: Jenna <[EMAIL PROTECTED]>; Susan <[EMAIL PROTECTED]>;
[EMAIL PROTECTED]
Cc: Martha Fleming <[EMAIL PROTECTED]>; Betty Budnek
<[EMAIL PROTECTED]>; RANDY RANKIN <[EMAIL PROTECTED]>
Sent: Tuesday, November 11, 2008 6:12:21 PM
Subject: Re: October TM meeting

R we going to meet this weekend???

-- Original message from Jenna <[EMAIL PROTECTED]>:
-- 

When and where are we meeting.  Sunday is fine with me so that
Randy can be there.  Please let me know.  Thanks so much!!  Have a great
week all. 

 

Jenna

 

 





From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]>
To: Susan <[EMAIL PROTECTED]>; [EMAIL PROTECTED]
Cc: Martha Fleming <[EMAIL PROTECTED]>; Betty Budnek
<[EMAIL PROTECTED]>; Jenna <[EMAIL PROTECTED]>; RANDY RANKIN
<[EMAIL PROTECTED]>
Sent: Sunday, November 9, 2008 7:40:53 PM
Subject: Re: October TM meeting

Maybe we can find something between Hiram and D'ville?

-- Original message from Martha Fleming
<[EMAIL PROTECTED]>: -- 

Okay. Sounds good to me.

--- On Wed, 11/5/08, [EMAIL PROTECTED] <[EMAIL PROTECTED]>
wrote:

From: [EMAIL PROTECTED] <[EMAIL PROTECTED]>
Subject: Re: October TM meeting
To: [EMAIL PROTECTED]
Cc: "Martha Fleming" <[EMAIL PROTECTED]>, "Betty Budnek"
<[EMAIL PROTECTED]>
Date:

RE: [TMIC] is this an M.S. problem?

[Butcher, Bernard G (NY80)]

Hi Randy - I was diagnosed with TM in 2002 and then in Nov 2007 I
started having vision problems - I saw double if I looked to my right -
after an MRI of my head, it was changed to MS. But don't go by me,
everyone's different - you should consult with your neurologist right
away. I think it was MS from the beginning I and I wish they diagnosed
it in 2002 - that way I could have started on the MS med copaxone then,
and it COULD have prevented the attacks I have had since
 
BERNARD BUTCHER
 



From: randy rankin [mailto:[EMAIL PROTECTED] 
Sent: Tuesday, October 14, 2008 9:29 PM
To: TM Group
Subject: [TMIC] is this an M.S. problem?


I have had some ear problems for the past few weeks. I went from hearing
well to sudden hearing problems, vertigo and blurriness with my vision.
When I talk, I hear the sounds of my voice muffled up inside of my head
and not like the usually normal hearing. The ear doctor cleaned up my
ear and it took 3 trips. My hearing seemed improved but a lot of the
wierdness kept going on - and I am hoping that it will just clear up. 
But the reason that I am writing is because the ear doctor said that a
lot of my problems seemed to have a neurological basis. I have had
vertigo, dizziness and things just seem wierd. My vision has been off in
a very odd way especially when I either try to focus or if I move my
head or something moves by me. 
He brought this up without prior knowledge of my history with TM and the
other oddities that I had had and wanted me to have an MRI to check to
see if my odd auditory and vision issues were being caused from
something in my brain. He asked me specifically if I had ever had
problems with tingling, numbness or other M.S. type symptoms and thinks
that my neuro should check it out.
I'm very skeptical about his ideas yet also a little nervous about
doubting his speculations.
Those of you who have MS, have you ever heard/experienced odd things
like sudden vertigo, dizziness, vision and auditory changes ect.? I'm
very nervous about this. I have already gone through two foot drops,
loss of my right leg, loss of bladder function and the pain and
miserable mobility issues that come with TM, the physical thearpy and
finally I am for the first time walking and getting around without
spasms or pain. I am not ready for a new bout with a new problem . 

RE: [TMIC]

[Butcher, Bernard G (NY80)]

Hi Wim - I think you are right about Baclofen - I think it is doing a
number on me. I am very weak now - it's very hard to get up from sitting
& my lower back is in pain.

It's even difficult to sit up straight. I don' think it's from exercise
although I am taking a break from it now fof the most part. I spoke to
my neuro yesterday & she said I could go from 20mg/day to 10mg. She also
said it should get better over time (?). She also said the pump will
help because it injects a tiny amount into my spine only, not a larger
amount into my system like the pills 

 

Barney



From: wim from holland [mailto:[EMAIL PROTECTED] 
Sent: Wednesday, September 03, 2008 8:57 AM
To: Butcher, Bernard G (NY80); tmic-list-at-eskimo.com
Subject: RE: [TMIC]

 

I am on 60mg a day now. You have to find for your self the good
combination, between the amount of Baclofen and the movement you still
can do the best. Baclofen is taking away some strength, but it also take
away the stiffness. Normal you start with a low dose of 15 a day, and
after a few month you can say if it is enough or you go to a higher
dose. In that time I had also trouble with short memory loss, if it was
the Baclofen or the TM, still don't know. Now it is almost back to
normal.
 
Wim






Subject: RE: [TMIC]
Date: Mon, 25 Aug 2008 08:21:41 -0400
From: [EMAIL PROTECTED]
To: [EMAIL PROTECTED]; tmic-list@eskimo.com



Thanks Wim - interesting - - have you tried Baclofen? I also can walk
(with walker) and since taking baclofen pills for 1 1/2 weeks, it has
gotten harder to do - especially getting up - I have been blaming it on
over-exercise, I have been getting down on the floor & doing some
exercises a couple of days per week, and I am going to stop for a while
to see if it improves. 

 

BERNARD BUTCHER

 

 



From: wim from holland [mailto:[EMAIL PROTECTED] 
Sent: Saturday, August 23, 2008 6:43 PM
To: Butcher, Bernard G (NY80); tmic-list-at-eskimo.com
Subject: RE: [TMIC]

My neuro told me that a pump is not a good idea. Because the stiffness I
can stand on my legs, even walk a little with crutches. Handy for going
to a toilet or take a shower. When a pump is installed, standing is out
of the question, no stiffnes and bad feelings is one, but no function is
for me out of the question.
 
Wim

> Date: Fri, 22 Aug 2008 16:18:32 -0400
> From: [EMAIL PROTECTED]
> To: tmic-list@eskimo.com
> Subject: [TMIC] 
> 
> 
> Hi all - I was told by my neuro that I may need to get a baclofen
pump.
> Right now I am taking baclofen pills, and next (if I have no bad
> reactions, I guess) I have to go through an evaluation test whereby
they
> inject baclofen into my spinal cord - then the pump gets installed
with
> a tube which automatically injects small amounts of baclofen into my
> spinal cord.
> Has anyone gone through this process? Stiffness is one of my biggest
> problems right now & she tells me the pump is the way to go. Sounds
> scary, the pump is actually inside me.
> 
> BARNEY
> 
> 





Je foto's bewerken en in elkaar laten overlopen met Windows Live Photo
Gallery <http://get.live.com/nl-nl/wl/all>  



Je foto's bewerken en in elkaar laten overlopen met Windows Live
Fotogalerij <http://get.live.com/nl-nl/wl/all> 

RE: [TMIC] my neurologist

[Butcher, Bernard G (NY80)]

Hi Krissy - I get rushed through my neuro visits also, and usually a new
med - just this month, she started me on Baclofen.
 
Barney
 
 
 om: Krissy Z [mailto:[EMAIL PROTECTED] 
Sent: Wednesday, August 27, 2008 1:20 PM
To: TM List; TMA-New-England
Subject: [TMIC] my neurologist


the past 3 visits to my neuro have been cold and stiff. (heh no pun
intended)..once he had a student with him to sit in and he repremanded e
for being 5 min late, and rushed me thru my appt and was cold and
unfeeling. He started out with me being happy and hopeful and
knowledable, but now he's rote and unfeeling and la te da it is what it
is go get an mri.
I didnt get my last mri because I couldnt afford it. I'm sure when I see
him next month he will mention that. He seems to rush thru my appts, not
give me any *hope*, not really doing anything for me. Does he just feel
he can do no more and has given up? he's always willing to offer mri's
and more drugs tho.  Do I say something to him?  Find a new one?(hate to
have to start over)

~Krissy~
We are all in this together, by ourselves.
- Lily Tomlin

~I'm In pretty Good Shape 
For the Shape I am in~  

RE: [TMIC] restless legs?

[Butcher, Bernard G (NY80)]

Hi Krissy - I take Gabapentin (which is generic Neuronton) and
Tizanidine for leg twitching at night - 12mg - it helps
 
Barney
 



From: Krissy Z [mailto:[EMAIL PROTECTED] 
Sent: Wednesday, August 27, 2008 1:13 PM
To: TM List; TMA-New-England
Subject: [TMIC] restless legs?


I've been taking neurontin for a little over 3 years now for my wacky
sensations so I could sleep. lately tho it seems they are getting
more...restless.towards the early eve I seem to take 1 pill (300mg)
then take 3 more at night before bed.  it used to be just 600-900 at
night. is my body getting too used to it? Is there something else I can
take instead? I know I need to get back to exercising to improve my
balance and try and strength train my leg..I'm sure that will help some
too.

~Krissy~
We are all in this together, by ourselves.
- Lily Tomlin

~I'm In pretty Good Shape 
For the Shape I am in~  

RE: [TMIC]

[Butcher, Bernard G (NY80)]

They say that when you get a spinal tap you should say flat on your back
for a period of time, however, I got one in December 2005 (my neuro said
I may have hydrocephalus & drained 50cc) & after the tap, they got me
right up to see if it helped with my walking - 
it didn't. 

BERNARD BUTCHER

-Original Message-
From: Tracey L. Black [mailto:[EMAIL PROTECTED] 
Sent: Monday, August 25, 2008 9:09 AM
To: Butcher, Bernard G (NY80); tmic-list-at-eskimo.com
Subject: RE: [TMIC] 

When my daughter was in Kennedy Krieger, there was a young gentleman
there who had been in a serious car accident and was  listed as a quad.
He had major spasms in his legs and nothing could be done until the
spasm itself calmed down. His legs would go straight out. They suggested
that he do the Baclofin pump as well. He underwent the surgery and
everything seemed to work out really well for him. The ONLY major issue
he had was that he had a major headache for about 3 days. They tried to
get him to move to early instead of laying flat on his back for a few
days. They basically had to knock him out for 3 days until everything
subsided. 


Tracey L. Black
Certified Insurance Service Representative Hockley & O'Donnell Insurance
Agency P.O. Box 3039
132 Buford Avenue
Gettysburg, PA 17325
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: Butcher, Bernard G (NY80) [mailto:[EMAIL PROTECTED]
Sent: Friday, August 22, 2008 4:19 PM
To: tmic-list-at-eskimo.com
Subject: [TMIC] 

 
Hi all - I was told by my neuro that I may need to get a baclofen pump.
Right now I am taking baclofen pills, and next (if I have no bad
reactions, I guess) I have to go through an evaluation test whereby they
inject baclofen into my spinal cord - then the pump gets installed with
a tube which automatically injects small amounts of baclofen into my
spinal cord.
Has anyone gone through this process? Stiffness is one of my biggest
problems right now & she tells me the pump is the way to go. Sounds
scary, the pump is actually inside me.

BARNEY

RE: [TMIC]

[Butcher, Bernard G (NY80)]

Thanks Wim - interesting - - have you tried Baclofen? I also can walk
(with walker) and since taking baclofen pills for 1 1/2 weeks, it has
gotten harder to do - especially getting up - I have been blaming it on
over-exercise, I have been getting down on the floor & doing some
exercises a couple of days per week, and I am going to stop for a while
to see if it improves. 
 
BERNARD BUTCHER
 



From: wim from holland [mailto:[EMAIL PROTECTED] 
Sent: Saturday, August 23, 2008 6:43 PM
To: Butcher, Bernard G (NY80); tmic-list-at-eskimo.com
Subject: RE: [TMIC]


My neuro told me that a pump is not a good idea. Because the stiffness I
can stand on my legs, even walk a little with crutches. Handy for going
to a toilet or take a shower. When a pump is installed, standing is out
of the question, no stiffnes and bad feelings is one, but no function is
for me out of the question.
 
Wim

> Date: Fri, 22 Aug 2008 16:18:32 -0400
> From: [EMAIL PROTECTED]
> To: tmic-list@eskimo.com
> Subject: [TMIC] 
> 
> 
> Hi all - I was told by my neuro that I may need to get a baclofen
pump.
> Right now I am taking baclofen pills, and next (if I have no bad
> reactions, I guess) I have to go through an evaluation test whereby
they
> inject baclofen into my spinal cord - then the pump gets installed
with
> a tube which automatically injects small amounts of baclofen into my
> spinal cord.
> Has anyone gone through this process? Stiffness is one of my biggest
> problems right now & she tells me the pump is the way to go. Sounds
> scary, the pump is actually inside me.
> 
> BARNEY
> 
> 





Je foto's bewerken en in elkaar laten overlopen met Windows Live Photo
Gallery <http://get.live.com/nl-nl/wl/all>  

[TMIC]

[Butcher, Bernard G (NY80)]

 
Hi all - I was told by my neuro that I may need to get a baclofen pump.
Right now I am taking baclofen pills, and next (if I have no bad
reactions, I guess) I have to go through an evaluation test whereby they
inject baclofen into my spinal cord - then the pump gets installed with
a tube which automatically injects small amounts of baclofen into my
spinal cord.
Has anyone gone through this process? Stiffness is one of my biggest
problems right now & she tells me the pump is the way to go. Sounds
scary, the pump is actually inside me.

BARNEY

[TMIC] Air conditioning

[Butcher, Bernard G (NY80)]

Hello all - I read somewhere that if you get a letter from your doctor
stating that you must have air conditioning because of your medical
condition (I was diagnosed  with TM, now MS) you can write it off as a
deduction on your taxes. Anyone hear this or claim a/c?
 
Barney
 

RE: [TMIC] swelling in foot and ankle

[Butcher, Bernard G (NY80)]

Yes, both my feet swell, even my 'better' leg - I wear compression socks
all day
 
BERNARD BUTCHER
 



From: jgrubb1 [mailto:[EMAIL PROTECTED] 
Sent: Thursday, July 31, 2008 4:55 PM
To: tmic
Subject: [TMIC] swelling in foot and ankle


Hi Everyone,
 
My right foot and ankle have been swelling  everyday now.  (this is the
side affected by TM)  It used to be only after I had been up all day but
now I wake up with it swollen.  Has anyone else experienced this?
 
Thanks for your reply.
 
Mom Maw in NC

RE: [TMIC] Cymbalta

[Butcher, Bernard G (NY80)]

Hi Regina - I tried Baclofen about a year or so ago with bad results, I
would wake up in the middle of the night & like couldn't move, plus I
think I was more stiff. My neuro said it takes some time to get into
your system (?) I take Tizanidine, but it makes me sleepy so I can't
take much during the day. My diagnosis went from TM to MS last February
and stiffness is a REAL problem - if my neuro wants me to try Baclofen
again, I will.

 

Barney in NY

 



From: Regina Rummel [mailto:[EMAIL PROTECTED] 
Sent: Tuesday, July 29, 2008 12:37 AM
To: tmic-list@eskimo.com
Subject: [TMIC] Cymbalta

 

Saw my neurologist today.  I told her about the problem with my right
eye (can't focus), about the intense fatigue, the constant pins/needles
sensation that have traveled to my lips and the tip of my tongue.  

I have a prescription for a head MRI and some blood tests that may show
or not what's going on. 

 

She's mentioned Cymbalta everytime I've seen her.  The last time, in
May, she gave me a prescription for 60mg.  I took it once, it knocked me
out, I didn't like it at all.  This time she brought it up again.  She
wants me to try 30mg.

 

The problem is that I'm looking up this drug online and it scares the
daylights out of me.  The side effects sound awful...   I won't be able
to take an occasional drink with it, she didn't tell me that, I read it
online.  I wonder if I should take 30mg every other day to start, maybe
for a week, then go to 30mg every evening and see what happens...  Much
was mentioned in the group about Baclofen, but I don't remember what the
comments were.

 

Please help.

RE: [TMIC] More money

[Butcher, Bernard G (NY80)]

Hi Diane - you might want to try Dr. Leonard's (drleonards.com) that's
where I get mine for about 9 dollars per pair. I have to wear them for
ankle swelling - they work, but are very hard to get on & off.
 
Barney
 



From: Diane [mailto:[EMAIL PROTECTED] 
Sent: Sunday, July 20, 2008 4:31 AM
To: TM
Subject: [TMIC] More money


Just bought my first pair of compression stockings and it was $ 95.
The dr wrote me a prescription for them because the pressure sores on my
ankles won't heal because my feet are always swollen.  Apparently, the
water prevents blood from properly circulating to those areas & healing
is greatly slowed down.
 
I just can't believe the amount of money I have to spend that is not
covered by the Province or by our private insurane - cushions, memory
foam for the bed, bandages, incontinence pads (just in case) and on and
so on.  They do cover my catheters - whoopie !
Diane in Canada

RE: [TMIC] Gracie

[Butcher, Bernard G (NY80)]

Grace - great show! I found it on FIOS ,Long Island channel 141.
You looked good 
You went through alot! made me think that I have to get off my butt & do
more.
 
BERNARD BUTCHER
 

RE: [TMIC]

[Butcher, Bernard G (NY80)]

I was told that they are - I was prescribed Neuronton & my meds company
(Medco) sent me Gabapentin
 
BERNARD BUTCHER
 



From: Colleen [mailto:[EMAIL PROTECTED] 
Sent: Sunday, July 06, 2008 4:56 PM
To: 'Gerry Surette'; [EMAIL PROTECTED]
Cc: tmic-list@eskimo.com
Subject: RE: [TMIC]



 

Isn't gabapentin and neurontin the same thing?  Colleen in NJ

-Original Message-
From: Gerry Surette [mailto:[EMAIL PROTECTED] 
Sent: Sunday, July 06, 2008 1:25 PM
To: [EMAIL PROTECTED]
Cc: tmic-list@eskimo.com
Subject: RE: [TMIC]

 

 

 

Have yiou tried gabapentin; Why are you taking 8 10 other meds. I am not
an 

md but you should certainly check with your md. re side effects. Why do
you 

want to try lyrica? gabapentin workes the same way as lyrica with no
side 

effects. to me and this is my personal opinion the less drugs you take
the 

better it is.

>From: robert hennessy <[EMAIL PROTECTED]>

>To: 

>Subject: [TMIC] Date: Sun, 6 Jul 2008 12:31:30 -0400

> 

>thanks to everyone who replied. let me clarify some of the meds i take.


>3600 milligrams of nuerotonin/day, baclofen, zanaflex, fioricet, i also


>take coumadin, so asperin is out of question. i also take about 9-10
other 

>drugs for various things. do you think a switch to lyrica would be
worth my 

>time? b/c it will take awhile to get weened off the nuerotonin.

>_

>Need to know now? Get instant answers with Windows Live Messenger.

>http://www.windowslive.com/messenger/connect_your_way.html?ocid=TXT_TAG
LM_WL_messenger_072008

 

 

 

 

-- 

No virus found in this incoming message.

Checked by AVG. 

Version: 7.5.524 / Virus Database: 270.4.5/1537 - Release Date: 7/6/2008
5:26 AM

 

RE: [TMIC] age at incident

[Butcher, Bernard G (NY80)]

Sorry, I forgot to mention - I was 55 when diagnosed with MS
 
BERNARD BUTCHER
 



From: Butcher, Bernard G (NY80) [mailto:[EMAIL PROTECTED] 
Sent: Monday, June 23, 2008 7:54 AM
To: Carol; Alton Ryder
Cc: TM List
Subject: RE: [TMIC] age at incident


Hi Carol - yes, I was. I was diagnosed with TM in 2002 but could walk OK
until 2005 lots of MRIs that showed leasons in my spine but not my brain
- around thanksgiving 2007, I started seeing double if I looked to my
right - MRI showed leasion on optic nerve - then they diagnosed me with
MS. Now I take Copaxone injections every day.
 
BERNARD BUTCHER
 



From: Carol [mailto:[EMAIL PROTECTED] 
Sent: Friday, June 20, 2008 8:51 PM
To: Alton Ryder
Cc: TM List
Subject: Re: [TMIC] age at incident


Hi all,
I'm a little behind in my reading, but as I was reading this message
from Alton, I wanted to report that I had my appointment with my new
neuro this past week.  And he thinks that it is very probable that I
also had a spinal cord infarct.  But it is now 3 years after the fact.  
 
If you don't remember my most recent messages, my former neuro wanted to
start me on MS shots 2 months ago.  My brain MRI, C-spine and Thoracic
spine were unchanged from 3 years ago which was not positive for MS.
Actually, my thoracic was changed, it showed the old injury and it not
being active.  My vision evoked response test or VER was also negative
for MS.  My new doctor is leaving some leeway, but says probably 80%
sure that it is not MS.  
 
Those of you who were originally diagnosed with TM, were any of your
diagnosis changed to MS around the age of 55-58 or older?
 
Carol in Culver, IN
 
 

- Original Message - 
From: Alton Ryder <mailto:[EMAIL PROTECTED]>  
To: Bob and Sue Mattis <mailto:[EMAIL PROTECTED]>  
Cc: TM List <mailto:tmic-list@eskimo.com>  
Sent: Thursday, June 05, 2008 6:14 PM
Subject: Re: [TMIC] age at incident

>   Took 10 minutes to become paralyzed from the waist down
(T12)



Strictly speaking, neither of us have TM. Myelitis is an
inflammation of the myelin; I don't believe any infection can have such
a sudden onset.  Moreover, my spinal fluid was clear of white blood
cells that would have been marshaled to fight an inflammation.  I,
perhaps we, had an infarction of a branch artery within the cord.

Alton

RE: [TMIC] age at incident

[Butcher, Bernard G (NY80)]

Hi Carol - yes, I was. I was diagnosed with TM in 2002 but could walk OK
until 2005 lots of MRIs that showed leasons in my spine but not my brain
- around thanksgiving 2007, I started seeing double if I looked to my
right - MRI showed leasion on optic nerve - then they diagnosed me with
MS. Now I take Copaxone injections every day.
 
BERNARD BUTCHER
 



From: Carol [mailto:[EMAIL PROTECTED] 
Sent: Friday, June 20, 2008 8:51 PM
To: Alton Ryder
Cc: TM List
Subject: Re: [TMIC] age at incident


Hi all,
I'm a little behind in my reading, but as I was reading this message
from Alton, I wanted to report that I had my appointment with my new
neuro this past week.  And he thinks that it is very probable that I
also had a spinal cord infarct.  But it is now 3 years after the fact.  
 
If you don't remember my most recent messages, my former neuro wanted to
start me on MS shots 2 months ago.  My brain MRI, C-spine and Thoracic
spine were unchanged from 3 years ago which was not positive for MS.
Actually, my thoracic was changed, it showed the old injury and it not
being active.  My vision evoked response test or VER was also negative
for MS.  My new doctor is leaving some leeway, but says probably 80%
sure that it is not MS.  
 
Those of you who were originally diagnosed with TM, were any of your
diagnosis changed to MS around the age of 55-58 or older?
 
Carol in Culver, IN
 
 

- Original Message - 
From: Alton Ryder   
To: Bob and Sue Mattis   
Cc: TM List   
Sent: Thursday, June 05, 2008 6:14 PM
Subject: Re: [TMIC] age at incident

>   Took 10 minutes to become paralyzed from the waist down
(T12)



Strictly speaking, neither of us have TM. Myelitis is an
inflammation of the myelin; I don't believe any infection can have such
a sudden onset.  Moreover, my spinal fluid was clear of white blood
cells that would have been marshaled to fight an inflammation.  I,
perhaps we, had an infarction of a branch artery within the cord.

Alton

RE: [TMIC] tm

[Butcher, Bernard G (NY80)]

Yes, I do. I try to push myself also. But sometimes I think I am doing
too much and sometimes I think I am not doing enough!
 
BERNARD BUTCHER
 



From: T Kanon [mailto:[EMAIL PROTECTED] 
Sent: Friday, June 06, 2008 9:51 AM
To: tmic-list@eskimo.com
Subject: [TMIC] tm


Hi Everyone,
I had just turned 52 when I was dealt this hand.  It seems so many of us
were in our fifties.  However I must admit I challenge myself so much, I
don't think I would care as much to be so active had I not come down
with tm.  Now it is almost like my own private mission to push my
limitations.  Does anyone understand what I mean?
Thank you to all for the birthday wishes!!!
Tobe  :O)
Brooklyn NY

RE: [TMIC] age at incident

[Butcher, Bernard G (NY80)]

51 started it all, another hit at 54
Now diagnosis is MS 


BERNIE BUTCHER

-Original Message-
From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Thursday, June 05, 2008 11:09 AM
To: [EMAIL PROTECTED]
Cc: [EMAIL PROTECTED]; tmic-list@eskimo.com
Subject: Re: [TMIC] age at incident

me to, I was 38,  onset 1 year ago
 [EMAIL PROTECTED] wrote: 
>  
> I was 38.
>  
> Barbara H.
>  
>  
> 
> _http://barbarah.wordpress.com/_ (http://barbarah.wordpress.com/)
>  
>  
>  
> 
> 
> 
> 
> 
> In a message dated 6/5/2008 8:05:43 AM Eastern Daylight Time, 
> [EMAIL PROTECTED] writes:
> 
> I was 62  when I was nailed eleven years ago.  A tiny infarction in 
> the spinal cord  at T9-10 dropped me in minutes.
> 
> Barbara Alma said, I believe, that she was 48.
> 
> 
> Alton
> 
> 
> 
> 
> 
>  
> 
> 
> 
> **Get trade secrets for amazing burgers. Watch "Cooking
with 
> Tyler Florence" on AOL Food.  
> (http://food.aol.com/tyler-florence?video=4?&NCID=aolfod000302
> )

RE: [TMIC] OT-House

[Butcher, Bernard G (NY80)]

Really? wow - I take Amantadine twice per day.
My neuro said it was for fatigue
 
BERNARD BUTCHER
 



From: Lynn Pouliot [mailto:[EMAIL PROTECTED] 
Sent: Tuesday, May 20, 2008 10:16 AM
To: Carol; tmic-list@eskimo.com
Subject: Re: [TMIC] OT-House


It was amantadine.  A medication that helps to lessen flu symptoms if
taken right away.  I believe it is also given to people who can't get a
flu shot to prevent the flu.
 
Lynn (in RI)

- Original Message - 
From: Carol   
To: tmic-list@eskimo.com 
Sent: Tuesday, May 20, 2008 7:17 AM
Subject: [TMIC] OT-House

What was the medication that Amber took that caused her death?
 
Carol in Culver, IN

RE: [TMIC] did you all see House? Gunny's response forwarded

[Butcher, Bernard G (NY80)]

When I was first diagnosed with TM in 2002, I was hospitalized for 10
days - they gave me IV antibiotics for 5 days & then IV steroids for 5
days
 
BERNIE BUTCHER
 




From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Saturday, May 17, 2008 12:11 AM
To: tmic-list@eskimo.com; [EMAIL PROTECTED]
Subject: Fwd: [TMIC] did you all see House? Gunny's response forwarded


OK Gunny,
We finally get some show even mentioning TM and then they go about
mentioning WRONG, BAD, LOUSY, etc. information.  Now you tell me, which
is better, no press or bad press??  One would think that on a show such
as HOUSE, the info given would be researched and correct, or is that
just too much to ask.  I thought that was what shows like ER did.  Then
again, I don't watch ER, only have heard of it.
 
Hugs to all, Barbara A
 
Bgunny7682 writes:
Your not missing anything kiddo. There are no antibiotic treatments for
TM.
Balmatmic writes: 
When I watched, I wondered also about the antibiotic treatment they were
giving the patient when they suspected TM, as I have never heard of this
treatment on the TMIC.  Has anyone had antibiotics as a first course of
treatment?


 





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at AOL Food
 .

RE: [TMIC] Dr's visit, just a follow up

[Butcher, Bernard G (NY80)]

Hi Jerry - I also take Tizanidine (same as Zaniflex) and dry mouth is a
big problem. But I only take it at night so I only have dry mouth for a
couple of hours in the morning. I take small sips of water & swish it
around in my mouth for a minute, & repeat as needed

BERNARD BUTCHER

-Original Message-
From: Gerry Surette [mailto:[EMAIL PROTECTED] 
Sent: Saturday, May 10, 2008 8:05 AM
To: [EMAIL PROTECTED]
Cc: tmic-list@eskimo.com
Subject: RE: [TMIC] Dr's visit, just a follow up

Regina; I take baclofin for spasticity I can not walk without it. re
fatigue; it is a side effect of your medication you are taking; I found
that out the hard way. I asked my pharmacist to list all the side
effects of the medication I was taking. lo and behold three of the8 I
take have fatuque as a side effect. My problem now is dry mouth about i
hour after takingZanaflex. I have tried chewing gum drinking coke( cola)
drinking water; nothing seems to help does anyone have a solution? I too
have duties to perform washing Ironing washing and waxing floors
cleaning kitchen and bathroom; I find it difficult but I perservere as
the net result of a clean aptartment mkes it worthwhile; my wife is a
big help as well. she spends most of her time with her mother who is
recovering from Cancer. one must have a positive attitude. If I didn't
have that I don'nt think I would be around today God bless you regina
and keep trying gerry


>From: Regina Rummel <[EMAIL PROTECTED]>
>To: tmic-list@eskimo.com
>Subject: [TMIC] Dr's visit, just a follow up
>Date: Fri, 9 May 2008 21:59:29 -0700 (PDT)
>
>I saw the neurologist yesterday.  She suggested we increase the 
>Neurontin to 900mg 3 times a day for a week, then increase to 1200mg 
>three times a week.  I asked about Lyrica in spite of my concerns since
some of you
>didn't do well with it.   She said Lyrica was similar to Neurontin, may

>work faster, is more expensive.   I asked if we can take Neurontin and 
>Lyrica together.  She said yes and that surprised me.  Do any of you 
>take both?  And about the spasticity in my hamstrings, she wants me to 
>take 10mg Bicoflen before I do my exercises.  Some of you made negative

>comments about Bicoflen, didn't you?  I guess you take it as needed.
>
>I mentioned my memory slipping somewhat.  I can order a brain MRI if
you 
>want to she said.  But I've had TIAs that probably are the cause.   It
all 
>went very fast because I type all the questions and concerns to make 
>sure I won't forget anything.
>
>What's wrong with me?  Fatigue is a 10 most of the time.  Chronic 
>fatigue is truly a handicap.  I can hardly walk. My left leg is acting 
>up big time, and so is my lower back (T10-T11 lesion).  I drag myself
with a walker.
>Every little thing is a challenge, etc..  Just lifting my left foot is 
>a challenge.  Speaking of foot, Frank was right.  Prednisone will
bruise you.
>  I stopped taking it, it's poison.
>
>I refuse to give up. I cleaned all the floors of my little apartment.  
>I cooked shrimp and pasta and steamed asparagus for me and my daughter.

>I watched and read the news ignoring the blurry right eye, I did this 
>and even did that  It's a big challenge to do every little thing.  
>And tomorrow I'll work all day in the gift shop and check the 
>inventory.  Once I smear the new Channel foundation on my face, eye 
>shadow and gloss on my lips,  perhaps if I look better, I'll feel
better.
>
>But back to the neurologist.  She is supposed to be one of the best in 
>Marin.  But why do I feel that she can't wait to go to the next room 
>where another patient is waiting?  I honestly feel that it's because we

>both know that there is nothing that can be done for me.  That we're 
>both waisting our time.
>
>Took a sleeping pill and smoked some pot (medicinal of course) so I can

>sleep.  But I feel better talking to you who is kind enough to put up 
>with this babbling.
>PS.  Jude, I'm thinking about you and hope you feel better and are 
>sleeping peacefully.

RE: [TMIC] Steriods AGAIN!

[Butcher, Bernard G (NY80)]

Good luck Carol
I get a steroid infusion every 3 months, 1,000 mg/day for three days.
Invariably on the 5th day I am sick as a dog for two days.
 Then I start feeling better.
Last Thanksgiving I had an attack which affected my right eye, I see
double when I look to my right - now my neuro tells me it's MS. When I
get each infusion, my eye gets better (a little).
 
BERNARD BUTCHER
 



From: Carol [mailto:[EMAIL PROTECTED] 
Sent: Saturday, May 03, 2008 12:16 PM
To: tmic-list@eskimo.com
Subject: [TMIC] Steriods AGAIN!


Hi all,
I know some of you do not believe in going the steroid route, but when
that's what your neurologist recommends and you are "getting worse",
what is one suppose to do?  Anyway, I will be receiving out-patient
solumedrol next week, Mon-Fri.  I hate steroids because they not only
make my blood sugar out of control, they also make me crazy.  I remember
2 years ago when I had this treatment, by day 3 all I did was cry.  I
was never so glad to get something out of my system as these steroids.
 
My local neuro says either I am having a TM flair-up or I have MS and it
just has not shown itself yet.  Last week, I had a MRI of my brain and
thoracic spine, with and without contrast and there was no change from 2
years ago, which is great news, but then WHY is my good leg getting
worse  It feels like it is shot full of Novocain from the knee down.
When I met with Dr. Kerr 2 years ago, he said I definitely do not have
MS and didn't think I would have any flair ups of TM.  I am in a state
of confusion.  If I have MS like my local neuro thinks, don't you think
it would be evident in my new MRI's?   
 
Wish me luck.
Carol in Culver, IN

RE: [TMIC] just a test

[Butcher, Bernard G (NY80)]

Good question (?)
 
BERNARD BUTCHER
 



From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Thursday, May 01, 2008 8:33 AM
To: tmic-list@eskimo.com
Subject: [TMIC] just a test


where is all the mail





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at AOL Autos  .

RE: [TMIC] Bruising

[Butcher, Bernard G (NY80)]

Try drleonards.com they have men's, women's different sizes &
compressions


BERNARD BUTCHER

-Original Message-
From: Diane [mailto:[EMAIL PROTECTED] 
Sent: Monday, April 28, 2008 9:08 AM
To: Butcher, Bernard G (NY80); [EMAIL PROTECTED]; Regina Rummel;
tmic-list@eskimo.com
Subject: Re: [TMIC] Bruising

I'm going to look into that, Bernie - Thanks.
Diane


- Original Message -----
From: "Butcher, Bernard G (NY80)" <[EMAIL PROTECTED]>
To: "Diane" <[EMAIL PROTECTED]>; <[EMAIL PROTECTED]>; "Regina
Rummel" 
<[EMAIL PROTECTED]>; 
Sent: Monday, April 28, 2008 7:25 AM
Subject: RE: [TMIC] Bruising


My feet swell up too. I wear compression socks - they help a lot. Very
tough to get on - and off.


BERNARD BUTCHER

-Original Message-
From: Diane [mailto:[EMAIL PROTECTED]
Sent: Thursday, April 24, 2008 6:47 PM
To: [EMAIL PROTECTED]; Regina Rummel; tmic-list@eskimo.com
Subject: Re: [TMIC] Bruising

Good grief, Frank!  I'm so glad you mentioned this.  I have an awful
time with my feet swelling.  I was worried about poor circulation but my
dr says no.  I don't eat salt.  I drink a lot of water.  I try to walk
as much as these (Stupid & Stupider) legs of mine will allow.  When I
sit, I put my feet up.  I've been on the verge of hiring someone to rub
them every night.
Wow.
Thnx.
Diane in Canada



From: <[EMAIL PROTECTED]>
To: "Regina Rummel" <[EMAIL PROTECTED]>; 
Sent: Thursday, April 24, 2008 4:22 PM
Subject: Re: [TMIC] Bruising


>  My feet seem to be getting bigger.   The bruising remained.

The swelling may be from the affects of TM on your blood vessels.  My
legs swell slowly during the day because of nerve damage in my spinal
cord.
Good Luck
F

RE: [TMIC] Bruising

[Butcher, Bernard G (NY80)]

My feet swell up too. I wear compression socks - they help a lot. Very
tough to get on - and off. 


BERNARD BUTCHER

-Original Message-
From: Diane [mailto:[EMAIL PROTECTED] 
Sent: Thursday, April 24, 2008 6:47 PM
To: [EMAIL PROTECTED]; Regina Rummel; tmic-list@eskimo.com
Subject: Re: [TMIC] Bruising

Good grief, Frank!  I'm so glad you mentioned this.  I have an awful
time with my feet swelling.  I was worried about poor circulation but my
dr says no.  I don't eat salt.  I drink a lot of water.  I try to walk
as much as these (Stupid & Stupider) legs of mine will allow.  When I
sit, I put my feet up.  I've been on the verge of hiring someone to rub
them every night. 
Wow.
Thnx.
Diane in Canada



From: <[EMAIL PROTECTED]>
To: "Regina Rummel" <[EMAIL PROTECTED]>; 
Sent: Thursday, April 24, 2008 4:22 PM
Subject: Re: [TMIC] Bruising


>  My feet seem to be getting bigger.   The bruising remained.

The swelling may be from the affects of TM on your blood vessels.  My
legs swell slowly during the day because of nerve damage in my spinal
cord.
Good Luck
F

RE: [TMIC] New Medication

[Butcher, Bernard G (NY80)]

Hi Rob - yes I take Tizanidine for spasms - up to 28mg/day - it works
great but makes me sleepy even if I take 2mg. I take 2mg at noon and
12mg at bedtime and some during the night if I need it for 'jimmy legs'
 
BERNARD BUTCHER
 



From: Robert Pall [mailto:[EMAIL PROTECTED] 
Sent: Wednesday, April 23, 2008 4:04 PM
To: tmic-list@eskimo.com
Subject: [TMIC] New Medication



I just started a new drug to help relieve banding. The drugs
name is Tizanidine or Zanaflex. Do any of you take it or have you
previously taken it. I have just started and am not up to the normal
dose yet...however I am finding a noticable improvement in the banding.
It is interesting that when I first started taking Lyrica I also noticed
an improvement that has since not been so pronounced!

Thanks! 

Rob in New Jersey 

RE: [TMIC] Misunderstood

[Butcher, Bernard G (NY80)]

I have fallen a few times when home alone - but I usually have my cell
phone on me, call my neighbor - a NYC fireman who helps - - - other
times I have crawled to my basement stairs, down a few steps & use the
hand rail to get on my butt on a step & then stand.
 
BERNARD BUTCHER
 



From: Robert Pall [mailto:[EMAIL PROTECTED] 
Sent: Wednesday, April 16, 2008 2:34 PM
To: Akua; tmic-list@eskimo.com
Subject: RE: [TMIC] Misunderstood


If one lives alone and fears what will happen if they fall and can't get
up, they should have a medic alert button or something similar which at
a press of a button contacts medic alert who then dispatches medical
help. I believe this is a fairly minimal expense...which could save our
lives!
 
Rob in New Jersey



From: Akua [mailto:[EMAIL PROTECTED] 
Sent: Wednesday, April 16, 2008 2:26 PM
To: tmic-list@eskimo.com
Subject: RE: [TMIC] Misunderstood



. I fear falling and no one will be there to help pick me up!
This is what I must come to term with.


This happened to me on February 29, 2008 at 9:45 am and November 14,
2005 at 3:04 a.m.
In 2005, I lost the ability to walk as I returned from the bathroom. I
crawled into my bedroom,  pulled on clothes
called the cat lady so that she could open the front door  then called
911 ( I didn't want them to break down the front door as I live alone).

On the 29th in my new bathroom and newly returned-to home, my char slid
away from me as I attempted
to move off my commode. God help me I said as I slid to the floor.
Workmen were right by the window
and I yelled for them to come back later

I can't even crawl and so slid a pad under me and
back-rowed/slid myself into my bedroom, rolling on the floor, dressed
myself, called 911 to put me back in the chair.

It was the perfect storm of undone stuff, the workmen were there to put
in my phone line (That they had removed and forgotten about) so i could
use my button and i was expecting some rubbermaid mats to keep the chair
from sliding.

So you can survive falling alone.
I would prefer to have companionship, but as I was living happily alone
before TM I hope to get back to independence once again.

Akua
-- 

RE: [TMIC] Misunderstood

[Butcher, Bernard G (NY80)]

Hi Rob - I can relate. My wife and especially my son - seem to not care
& leave obstacles in my way (I walk with walker only) - I think they do
care, but are equally angry and confused about this as I am - I got
promoted (or demoted) from TM to MS in February '08. before this all
happened, I did Everything - mowed, shoveled snow, fixed cars and
appliances, painted & patched, and played golf (badly), now none of
those.
 
BERNARD BUTCHER
 



From: Robert Pall [mailto:[EMAIL PROTECTED] 
Sent: Wednesday, April 16, 2008 8:51 AM
To: tmic-list@eskimo.com
Subject: [TMIC] Misunderstood



Thanks to all of the group who responded to my question! Other
than a couple of  members who stated that their spouses try their best
to understand, including going to symposiums, reading from the list
etc., most of the others seem to share my frustrations making our loved
ones understand what we go thru 24/7. Many members have gotten divorced
over our condition either because there spouses did not understand or
did not care enough. This to me is both sad and frustrating! I have
tried my best to explain to my wife how difficult my daily life is. She
believes that giving sympathy will make me worse ands she chooses to
treat me normally hoping I will act normally...I usually come close to
her wishes...however there are times when I just need a hug, some
sympathy and most importantly some understanding. I know this will not
happen...therefore I have to come to terms with how I personally will
deal with this. I know I want to stop working, move someplace warm and
spend the rest of my life answering to only myself...this may come to
pass...however deep in my mind I fear being alone. I fear falling and no
one will be there to help pick me up! This is what I must come to term
with.

As an aside my wife told me that when I started up the New
Jersey support group and started talking to members I tended to feel
worse about myself...I think this is bull but how do you explain to
someone who can't understandand won't even try!

Thanks for letting me vent again! 

Rob In New Jersey 

RE: [TMIC] med question - meloxicam and baclofen

[Butcher, Bernard G (NY80)]

I take Tizanidine (zaniflex) every night - I think I would have big
trouble sleeping if I didn't - I get "jimmy legs". Taking it during the
day as prescribed by my neuro is a problem because it makes me sleepy.
In the morning I sometimes have dry mouth so bad, the inside of my mouth
sticks to my teeth - tough talking like that! 


BERNARD BUTCHER

-Original Message-
From: Gerry Surette [mailto:[EMAIL PROTECTED] 
Sent: Tuesday, April 08, 2008 3:36 PM
To: [EMAIL PROTECTED]
Cc: tmic-list@eskimo.com
Subject: RE: [TMIC] med question - meloxicam and baclofen

It is the opposite with me I have been on baclofin for approximately 5
years. I too felt "stupid" at the begining but taken  in conjunction
with zanaflex; I can't walk or function without them.  It took
approximately five changes in strengh before my neuro was pleased with
the disage. The only side effects I now experience is dry mouth; The
long term is that you must consult your neuro before stopping taken it;
Once on it it is very dangerous to stop taken it;

>From: <[EMAIL PROTECTED]>
>To: randy rankin <[EMAIL PROTECTED]>,"Butcher, Bernard G
(NY80)" 
><[EMAIL PROTECTED]>,TM Group 
>Subject: RE: [TMIC] med question - meloxicam and baclofen
>Date: Tue, 8 Apr 2008 9:50:09 -0700
>
>Yes.  I can't take more than 10mg and was totally stupid at 20mg.  
>However, I also find that pain makes me stupid since I can't 
>concentrate on anything else.
>What a vicious cycle we're in!
>
>Patti
> "Butcher wrote:
> > Hi Patti - Do you find that Baclofen makes it difficult to think? I 
> > took it for a while, and it made me kinda stupid I couldn't do my 
> > crossword
> >
> >
> > BERNARD BUTCHER
> >
> > -Original Message-
> > From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]
> > Sent: Friday, April 04, 2008 5:43 PM
> > To: randy rankin; TM Group
> > Subject: Re: [TMIC] med question - meloxicam and baclofen
> >
> > Randy
> > I had similar confusion with what I heard from various medical
people.
> > Dec 2003 my neuro rx'd baclofen for spasticity and the next day I 
> > had physical and occupational therapy. Both therapists told me I 
> > didn't have spasticity and wanted permission to talk with my neuro.

> > So there I was in my TM stupor questioning who knew best.  I started

> > on the baclofen and have never discontinued it.  My Neuro knew best.
> > I am too flexible (rubbery) if I take over 10mg so he moved me to 
> > every six hours and that works for me.
> > I couldn't have discribed it at well as Merieke's post, however, 
> > it's exactly how both the spasms and spasticity feel to me.
> > Patti
> >  randy rankin <[EMAIL PROTECTED]> wrote:
> > > Ok - what's the scoop on these drugs. Have any of you all taken
them?
> > >
> > >   Did they help?
> > >
> > >   Where there any significant side effects?
> > >
> > >   I was sent to a bone doc. to have a look.
> > >
> > >   He wants me to try baclofen for spasms, (i didn't know that I 
> > > was having them - everyone else says that I'm not have spasms - 
> > > I'm so confussed on the term spasms. - first neuro talked about my

> > > legs being
> >
> > > spastic because they wouldn't move - he pick them up and the right

> > > leg
> >
> > > would stick in mid area lol - he'd have to push it back down. When

> > > I mentioned "spasm" later, everyone would look at me oddly and say

> > > that I wasn't having spasms. Now this guy is giving me meds for 
> > > spasms and says that my right leg shows signs of spasticity)
> > >
> > >   He said my vert was great - mild degeneration in mid T and at 
> > > L-5
> > S-1 - which I already knew about. The 'arthritis' is genetic/ 
> > "getting older" he said - but it is unusual for my age. He said my 
> > 2001 car accident didn't have anything to do with it - but my chiro 
> > told me in 01 that it would come in time because it almost always 
> > shows up in a few years after a major collision. Anyway - what's the

> > scoop on all these meds. before I decide to go ahead and take them I

> > just wanted find out if it is worth the time.
> > >
> > >
> > > -
> > > You rock. That's why Blockbuster's offering you one month of
> > Blockbuster Total Access, No Cost.

RE: [TMIC] med question - meloxicam and baclofen

[Butcher, Bernard G (NY80)]

Hi Patti - Do you find that Baclofen makes it difficult to think? I took
it for a while, and it made me kinda stupid I couldn't do my crossword 


BERNARD BUTCHER

-Original Message-
From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Friday, April 04, 2008 5:43 PM
To: randy rankin; TM Group
Subject: Re: [TMIC] med question - meloxicam and baclofen

Randy
I had similar confusion with what I heard from various medical people.
Dec 2003 my neuro rx'd baclofen for spasticity and the next day I had
physical and occupational therapy. Both therapists told me I didn't have
spasticity and wanted permission to talk with my neuro.  So there I was
in my TM stupor questioning who knew best.  I started on the baclofen
and have never discontinued it.  My Neuro knew best.  
I am too flexible (rubbery) if I take over 10mg so he moved me to every
six hours and that works for me.  
I couldn't have discribed it at well as Merieke's post, however, it's
exactly how both the spasms and spasticity feel to me. 
Patti
 randy rankin <[EMAIL PROTECTED]> wrote: 
> Ok - what's the scoop on these drugs. Have any of you all taken them? 
>
>   Did they help?
>
>   Where there any significant side effects?
>
>   I was sent to a bone doc. to have a look. 
>
>   He wants me to try baclofen for spasms, (i didn't know that I was 
> having them - everyone else says that I'm not have spasms - I'm so 
> confussed on the term spasms. - first neuro talked about my legs being

> spastic because they wouldn't move - he pick them up and the right leg

> would stick in mid area lol - he'd have to push it back down. When I 
> mentioned "spasm" later, everyone would look at me oddly and say that 
> I wasn't having spasms. Now this guy is giving me meds for spasms and 
> says that my right leg shows signs of spasticity)
>
>   He said my vert was great - mild degeneration in mid T and at L-5
S-1 - which I already knew about. The 'arthritis' is genetic/ "getting
older" he said - but it is unusual for my age. He said my 2001 car
accident didn't have anything to do with it - but my chiro told me in 01
that it would come in time because it almost always shows up in a few
years after a major collision. Anyway - what's the scoop on all these
meds. before I decide to go ahead and take them I just wanted find out
if it is worth the time. 
> 
>
> -
> You rock. That's why Blockbuster's offering you one month of
Blockbuster Total Access, No Cost.

RE: [TMIC] Fluid retention

[Butcher, Bernard G (NY80)]

No - I would love to hear it!
 
BERNARD BUTCHER
 



From: jrushton [mailto:[EMAIL PROTECTED] 
Sent: Thursday, March 27, 2008 3:39 PM
To: Butcher, Bernard G (NY80); tmic-list@eskimo.com
Subject: RE: [TMIC] Fluid retention


Bernard, has anyone shown you how to put the socks on by first turning
them wrong side out? 
Jeanne 
 
---Original Message---
 
From: Butcher, Bernard G (NY80) <mailto:[EMAIL PROTECTED]> 
Date: 3/27/2008 8:33:01 AM
To: [EMAIL PROTECTED];  [EMAIL PROTECTED];  [EMAIL PROTECTED]
Cc: tmic-list@eskimo.com
Subject: RE: [TMIC] Fluid retention
 
I also have this problem. I wear compression socks & they help. But they
are a bear to get on & off
 
 
BERNARD BUTCHER
 
-Original Message-
From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]
Sent: Thursday, March 27, 2008 9:29 AM
To: [EMAIL PROTECTED]; [EMAIL PROTECTED]
Cc: tmic-list@eskimo.com
Subject: Re: [TMIC] Fluid retention
 
>  I also start the day out  with thin ankles and end up with fat ones.
 
My solution for the dependent edema- swelling caused by gravity and the
lack of nerve control of the arteries and veins- is
 
hanging upside down. I put in my ear-buds, turn on my ipod, and flip
myself upside down for 30 minutes.
 
Works great.
 
F
 
 

RE: [TMIC] Fluid retention

[Butcher, Bernard G (NY80)]

I also have this problem. I wear compression socks & they help. But they
are a bear to get on & off 


BERNARD BUTCHER

-Original Message-
From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Thursday, March 27, 2008 9:29 AM
To: [EMAIL PROTECTED]; [EMAIL PROTECTED]
Cc: tmic-list@eskimo.com
Subject: Re: [TMIC] Fluid retention

>  I also start the day out  with thin ankles and end up with fat ones.

My solution for the dependent edema- swelling caused by gravity and the
lack of nerve control of the arteries and veins- is 

hanging upside down. I put in my ear-buds, turn on my ipod, and flip
myself upside down for 30 minutes.

Works great.

F

RE: [TMIC] requesting advice from you experienced souls

[Butcher, Bernard G (NY80)]

I get Prednisone infusion 1,000 mg every three months. It makes me ill
for a few days, then I feel better.
 
BERNARD BUTCHER
 



From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Friday, March 21, 2008 10:14 AM
To: Fellows-n-Ladies TMIC
Subject: [TMIC] requesting advice from you experienced souls


I am celebrating my first year with TM.  I can walk but need a cane
because of poor balance.  My stamina has gone away ... I can walk a
block or two but then need to rest for a few minutes.
 
I have banding around my chest, growing area and knees.  I get relief by
taking 4mg of the steroid Prednizone (sp?) to reduce the swelling of my
spinal cord.
 
Are any of you taking anything similar?Anything better?