RE: [TMIC] Question - Spinal Stimulator

[cakalley]

That's interesting that you only take the Amantadine 2X a day for 5 days a 
week.  I was told 2X a day period.  It did work great for 2 months but it's 
like my system started to reject everything.  First the Amantadine started 
giving me flu like sysmptoms - headache, sick to my stomach, ackey thoughout my 
body, coughing, etc.  I stopped the Amantadine and within 48 hours, everything 
stopped.  Then 2 days latter, the problem with the tens pads started - big 
hives in some spots and a rash in most of the spots.  I'm now peal the gel pads 
off and use personal lubricant and paper tape on the pads.  So far so good.
My neruo put me on the provigil which I've been on for the past 3 days.  
Eventhou, I take 100mg in the morning around 9 a.m., I can't fall asleep until 
2 or 3 in the morning and don't wake up until 9 or 10 in the morning.  I just 
hope that doesn't go on.  I just might stop the provigil, and use l-carnitine 
and an amino acid capsule.  They helped even before the Amantadine.
Thank you for the info.
Prayers and thoughts to you and yours,
Candy K.
-Original Message-
From: Butcher, Bernie (SFS) [EMAIL PROTECTED]
Sent: Sep 14, 2007 10:15 AM
To: cakalley [EMAIL PROTECTED], transversemyelitissupport [EMAIL 
PROTECTED], tmic-list tmic-list@eskimo.com
Subject: RE: [TMIC] Question - Spinal Stimulator

Hi Candy
Yes, I tried Provigil and it seemed to work great sometimes  other
times, nothing (although my insurance paid zero for it - I got some
samples from my MD). Then my neuro put me on Amantadine - initially it
worked great, my legs felt lighter. I take it twice a day, five days a
week  I think it helps.  


BERNARD BUTCHER

-Original Message-
From: cakalley [mailto:[EMAIL PROTECTED] 
Sent: Thursday, September 13, 2007 3:29 PM
To: transversemyelitissupport; tmic-list
Subject: [TMIC] Question - Spinal Stimulator

I just returned from my Nuro.  The amantadine after nine weeks, was
giving me terrible flu like symptoms.  He gave me 4 weeks of  provigil.
Has anyone used provigil?

My tens pads had caused a rash everywhere I put the pads.   However
without the tens, my spasms and cramps had returned with a vengance!  
My Neuro had 2 suggestions, use the tens but go see an allergerist to
see if there is some special creme to control the rash OR have an
operation for a  permanent spinal stimulator.
My question is has anyone had the spinal stimulator?  If so, what was
the recovery time?  How does it work? 
Prayers and thoughts for all,
Candy K.

Candy K.


Candy K.

Re: [TMIC] OT: MS vaccine tests

[cakalley]

OH this sounds GREAT not only for MS but for TM'ers.
Prayers and thoughts for all,
Candy K.
-Original Message-
From: Kevin Wolfthal [EMAIL PROTECTED]
Sent: Aug 14, 2007 5:49 PM
To: Tmic-list@eskimo.com
Subject: [TMIC] OT:  MS vaccine tests



fyi:


http://www.canada.com/montrealgazette/news/story.html?id=56d1425a-eb62-4753-8d6d-1406d65de1fc



Candy K.

RE: [TMIC] Anyone else?

[cakalley]

Natalie,
Generic name is tizanidine.  Zanaflex is suppose to help with the muscle 
spasms.  However, my TENS unit has done much better in reducing the muscle 
spasms plus relieving the lower back pain. I hardley take any pain meds now - 
only on the VERY BAD days usually the day after I've done too much the previous 
day or its going to rain - waiting to see about the cold weather!
Hope info helps.
Prays and thoughts for each and everyone,
Candy K. 

-Original Message-
From: natalie mizenko [EMAIL PROTECTED]
Sent: Aug 11, 2007 10:55 AM
To: cakalley [EMAIL PROTECTED]
Subject: RE: [TMIC] Anyone else?

Candy,
  What is Zanaflex?  I've never heard of it.  Is it like Zanax?  Natalie M.
  
  

cakalley [EMAIL PROTECTED] wrote:   I take zanaflex and experience the dry 
mouth. It seems worse in the morning, sometimes even waking me up. However, I 
have experienced very dry mouth feelings during the day especially if I had 
been doing something labor intense or after walking distances.
Candy K.

-Original Message-
From: marieke dufresne 
Sent: Aug 9, 2007 7:55 PM
To: [EMAIL PROTECTED], tmic-list@eskimo.com
Subject: RE: [TMIC] Anyone else?

Hi Natalie,
About the dry mouth, what meds are you on? Many of them have this as a side 
effect, especially Ditropan (for the bladder).
Marieke


From: natalie mizenko 
To: Transverse Myellitis 
Subject: [TMIC] Anyone else?
Date: Thu, 9 Aug 2007 16:53:19 -0700 (PDT)

 To the group:
 Has anyone ever experienced a very dry mouth, especially through the 
night and in the morning. Also, last night my arms were hurting me so 
badly, and I have not been anywhere but hom. Especially from my elbow to 
my wrist. I have a knot under the skin on both arms in that area. They 
were worse last night  this morn. but today they were some better, after 
all I ended up taking a pain pill. This has never occurred so badly. I've 
been noticing the mouth, but not the arms, til last night. Natalie M.



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Candy K.



   
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Candy K.

RE: [TMIC] Anyone else?

[cakalley]

I take zanaflex and experience the dry mouth.  It seems worse in the morning, 
sometimes even waking me up.  However, I have experienced very dry mouth 
feelings during the day especially if I had been doing something labor intense 
or after walking distances.
Candy K.

-Original Message-
From: marieke dufresne [EMAIL PROTECTED]
Sent: Aug 9, 2007 7:55 PM
To: [EMAIL PROTECTED], tmic-list@eskimo.com
Subject: RE: [TMIC] Anyone else?

Hi Natalie,
About the dry mouth, what meds are you on? Many of them have this as a side 
effect, especially Ditropan (for the bladder).
Marieke


From: natalie mizenko [EMAIL PROTECTED]
To: Transverse Myellitis tmic-list@eskimo.com
Subject: [TMIC] Anyone else?
Date: Thu, 9 Aug 2007 16:53:19 -0700 (PDT)

 To the group:
   Has anyone ever experienced a very dry mouth, especially through the 
night and in the morning.  Also, last night my arms were hurting me so 
badly, and I have not been anywhere but hom.  Especially from my elbow to 
my wrist.  I have a knot under the skin on both arms in that area.  They 
were worse last night  this morn. but today they were some better, after 
all I ended up taking a pain pill.  This has never occurred so badly.  I've 
been noticing the mouth, but not the arms, til last night.  Natalie M.



-
Fussy? Opinionated? Impossible to please? Perfect.  Join Yahoo!'s user 
panel and lay it on us.

_
Windows Live Hotmail is the next generation of MSN Hotmail.  It’s fast, 
simple, and safer than ever and best of all – it’s still free. Try it today! 
www.newhotmail.ca?icid=WLHMENCA146



Candy K.

Re: [TMIC] A new member Jim Belz,and his wife Carol, active Secretary

[cakalley]

Marieke,

I really admire you.  I don't know how you do it! I would say that you really 
deserved the award you received. 
My fatigue is better since I started taking amantidine and L-Carnatine 2X 
daily.  While the two have helped, I find that I overdo and then crash for a 
day or 2 - this is better than before because I would crash for 2 to 5 days - 
depending on what I had done. 
I have also been able to cut my afternoon nap down to 2 hours instead of the 
old 4 since starting the amantidine and L-Carnatine.
I only take tylenol x-strength daily since I started using my TENS unit.  I was 
taking hydroco 2 or 3 X a day along with the tylenol in-between!  I still take 
the zanaflex and zoloft.  Some days the depression of what I can/can't do gets 
to me but most of the time I stay up beat or try to! 
Enough about me.

CONGRADULATIONS on your achievements Marieke!

Candy K.


-Original Message-
From: marieke dufresne [EMAIL PROTECTED]
Sent: Aug 8, 2007 5:33 PM
To: [EMAIL PROTECTED], [EMAIL PROTECTED], tmic-list@eskimo.com
Subject: Re: [TMIC] A new member Jim Belz,and his wife Carol, active Secretary

Hi,
I should introduce myself too. I am 31, I was 28 when I got TM in March 
2004. I was paralyzed from the breastbone down too, at T1. I spent 10 weeks 
at the Montreal General as I managed to get C.Diff and had some GI problems 
after that that had to be sorted out before I was strong enough for Rehab. I 
then spent 8 months at the Montreal Rehab Institute where I went from being 
in a wheelchair to walking with a long leg brace and a walker, to the leg 
brace and canadian crutches to where I am now, a Cane and the brace of 
course!

I went back to work 6 months after being paralyzed, taught pre-k from my 
wheelchair. That February 2005 I got a GI problem again, partially brought 
on by stress, by fatigue, and the flu and ended up in the hospital for 3 
weeks again! When I got out I decided that's it, I am going back to school 
to do what I really want! Nursing. Sounds crazy right? I was still in a 
chair, was able to walk and stand but not for any long lengths of time. I 
applied and got in to Dawson College. All they knew what that I used a cane 
and a leg brace and of course the reason why I was paralyzed.

When June rolled around and school ended on the Friday, I decided that by 
Monday I would NOT use the chair anymore, UNLESS it was for the mall or any 
long distance type thing. And that Monday that is exactly what I did.

I started nursing school in Spetember 2005 and am about to start my 3rd and 
final year! I do 8hr clinical days just like the others, no special favours 
or treatment. I do everything my classmates do and they even come to me for 
help! I won an award last semester for clinical work and for being a 
helpfull, compassionate classmate. It was an award that means a lot to me as 
it was chosen by my clinical group mates. We were all asked to nominate 
someone and they all chose me, it menat so much because I still sometimes 
feel as if i have to prove myself over and over again.

Nursing is NOT easy when you are healthy, the hours are bad and long, you 
often work hard and no one tells you thank you, but when they do it feels 
great! Now try nursing when you have a disability, take Neurontin, Baclofen, 
Zanaflex which all make your BP drop, have to self-cath and have a slow 
bowel so must wake up 45min earlier that you should have to, and have to 
take BP meds to increase your BP to be able to function while on your feet! 
(Yeah, I take 2 types and so far mediocre results).

In my spare time, I blog about my life, moderate the TMA site and a student 
nurse site.. and sleep...
Anyhow, I wrote a book! Sorry about the long read!
Marieke :)
http://nurse-to-be08.blogspot.com


From: [EMAIL PROTECTED] [EMAIL PROTECTED]
To: [EMAIL PROTECTED], tmic-list@eskimo.com
Subject: Re: [TMIC] A new member Jim Belz,and his wife Carol, active 
Secretary
Date: Wed, 08 Aug 2007 17:16:32 -0400

Welcome,

I know how you must feel.  I had retired from medicine and was doing a 
little writing, living the good life when TM hit me in Aug 2000.  When I'm 
down I dig up all those activities I'd seen myself doing in my retirement 
at 53 y.o..

It could be a lot worse!!

Count your blessings!!

F


_
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tricks, watch the video now  http://safety.sympatico.msn.ca/



Candy K.

Re: [TMIC] Neurologist, Rheumatologists

[cakalley]

Natalie,

My Nero also doesn't keep up on the latest on TM.  He did know enough after 
ruling everything else out, that it was TM. However, he did not know about the 
Plasma Exchanges.  It was only after my sister gave him the John Hopkins 
website and info. that he called and investigated the PLEX treatments. He's 
told me that he has tried it on several other patients - some helped some 
didn't.
What I do now, is take in the TM digest when I get it and point out certain 
items to him.  Sometimes he takes it and makes copies of an articles or other 
articles that he has found when he has flipped thru it.  
I have also printed out info from here and what I have found out on the web and 
take these in also.  He'll flip thru them, stop and look at different items 
that he finds interesting.  Hopefully, he will read and get curious and then 
from there do more investigation.
If you ever watch the Discovery Health channel, many patients or relatives of 
patients, have to do all kinds of investigating not only of symptoms but also 
on specialists in the field of problems.  
My GP is better at looking things up than my Neuro BUT both are males and you 
know males are least likely to ask for directions.
Well this is my novel - Sorry.

Candy K.
  
 

-Original Message-
From: natalie mizenko [EMAIL PROTECTED]
Sent: Aug 3, 2007 7:29 PM
To: Transverse Myellitis tmic-list@eskimo.com
Subject: Re: [TMIC] Neurologist, Rheumatologists

Regina,
  You have every right to vent.  We all have to vent every now and then.  I 
 went to my back surgeon who had done 3 surgeries on L5-Sl the last 2 years, 
 finally the last surgery he fused it.  I had Cauda Equina Syndrome.  I had 
 heard that it could paralyze you, very rare tho.  Well, he said it was not 
 related to Cauda Equina  was not anything from L5-Sl.  He didn't know for 
 sure cuz I couldn't  have an MRI.  I had a dorsal  column stimulator in for 
 pain (14 years it was still in  didn't work) but I cud not have MRI's due to 
 the magnetic leads attached.  So he left went on vacation for 2 wks.  he 
 sent me to a Rehab.  I think he should have sent me to one of his co-doctors, 
 but he did not.  By the time he was back both legs were paralyzed and it was 
 too late for any treatment to work.  And my internist to this date says I 
 don't know hardly anything about TM.  Why doesn't he eduate himself on it?  
 P.O.'s me, ya know?  An a internist of all things.  It was very ironic, but
 another person in my internist's office got TM within a couple mths. of me 
 getting it.  I went in for pain control (hospital).  Another dr. was on call 
  he said it is ironic as rare as TM is; I have a patient upstairs I'm doing 
 steriod treatment on to try and reverse it.  He said I didn't know anything 
 about it, til I looked up the symptons on the internet.  I felt like saying 
 will  you eduate you partner on it, my dr.?  But, I did not.  I think one 
 day I'll print out literature and give it to him the next visit.  Geez, I 
 ended up venting.  I guess it's the day.  Natalie M.
  
  

Regina Rummel [EMAIL PROTECTED] wrote: I was diagnosed with Sjogrens in 
the mid-80s and that's when I started seeing a rheumatologist regularly.  
After that, I understood why I had dry eyes and have been using eye drops ever 
since.  I subsribed to the Sjogren's newsletter and joined a group.  Many in 
the group were in bad shape, complications like Lupus, etc.  I had no problem 
beside the dry eye and some fatigue.  I learned about autoimmune diseases, 
possible complications, central nervous system attacks unlikely (so they said 
at the time),  and I profusely thanked my lucky star that all I had to 
complain about was dry eyes.
   
  Then, sometimes in 2004, I woke up with strange sensations in my left leg 
 and sensed my balance a bit off.  Checked on line, and found something that 
 described what I felt (peripheral neuropathy), made an appointment with a 
 neurologist that I also began seeing regularly.  
   
  I didn't see the need to see a GP.  Rheum. and Neuro. were taking care of me 
 consulting with one another.  That was maybe a mistake, but why also see a 
 third doctor, I thought.
   
  Shortly after,  when I told the rheumatologist that I didn't feel my bowel 
 movements, she immediately sent me for Cytoxin treatments, an MRI, and put me 
 on high doses of prednisone.  I looked at the prescription and read 
 Transverse Myelitis.  I had no idea what she was talking about.  And of 
 course, I saw the neuro regularly.
   
  I progressively got worse in spite of the above treatments, plus IVIG 
 treatment.  Nothing helped. 
   
  The last time I saw my rheumatologist was in February of this year.  (I'll 
 be venting now.)  I had been seeing this woman for 10 years, ever since I 
 moved from L.A.  I walked in for the first time with a walker.  I was so weak 
 and tired, I could hardly walk.  Even though she knows me well, she never 
 asked what's with the walker, 

[TMIC] OT - So Sorry - Been busy

[cakalley]

I'm sorry to say that this is the first that I have written in almost 2 weeks. 
I've been reading messages, but just too tired to think and write.
I'm having my place remodeled because it use to take me 10 feet to go from my 
favorite chair in the Living Room to my Kitchen which was just on the other 
side of the wall of the Living Room.
Also, with the remodel, I'm preparing for the case of the need to go back into 
a wheelchair/scooter to get around in my home.
Thank GOD for Amantadine and L-Carnitine because without them, I'd be exhusted 
by 11 or noon and it's already taking longer and costing more than I had 
planned BUT it will be worth it in the long run. The Kitchen, Dining Room and 
Living Room will be one big open L shaped.  I can hardly wait!
Enough about me! 
I'm sorry that I haven't been able to welcome all the new members before now 
but WELCOME to our elite club.
To those of you who wanted or needed responses and/or answers, please forgive 
this one member because I have ran out of spoons many a day especially when I 
needed just one or two more to just get everyone out and make it to my chair 
for a nap which at times has lasted till the next morning!
Each and everyone of our members is important to me because each and everyone 
has contributed to my well being physcially and mentally in one way or another. 
 
I will be busy for the next week or two, but will try to contribute on my 
day off.
Candy K. 


Candy K.

Re: [TMIC] What do you think are solutions to the health care crisis?

[cakalley]

Barbara,

I think all governments should kick out the lobbyist for the pharmacy, 
insurance, and medical fields.  
Lobbying in government should be crime punishible by the most highest degree!
Did you see where the lobbyist were able to get a bill thu where Medicare does 
NOT require pharmacy co. to bid on medicines?  The VA requires it but NOT 
Medicare.  Quess who was behind that bill!  
While we may have a good government system in theory, the greed has multiplied 
all thru the years and the common tax payer, not the millionairs nor 
billionairs, foot the tax money for all the greed in Washington and each and 
every state!

My two cents for today on this.

Bless all,

Candy K.

-Original Message-
From: [EMAIL PROTECTED]
Sent: Aug 4, 2007 10:37 AM
To: tmic-list@eskimo.com
Subject: [TMIC] What do you think are solutions to the health care crisis?

Medical expenses are astronomical, particularly when someone  is sick and 
can't work. I don't like insurance being tied to one's employer,  
necessitating 
all new paperwork when someone changes or jobs or when someone  buys out your 
employer and institutes new health care coverage -- not to mention  that the 
medical problems you've been dealing with are now preexisting  conditions 
under the new policy.
 
But I am not impressed with what I hear about socialized  medicine, either -- 
long waits to see a doctor or to have tests  done.
 
I think the government is too big, unwieldy,  bureaucratic, and inefficient 
to take over health care.
 
So what is the solution?
 
Barbara H.
_http://barbarah.wordpress.com/_ (http://barbarah.wordpress.com/) 



** Get a sneak peek of the all-new AOL at 
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Candy K.

Re: [TMIC] osteoporosis

[cakalley]

Since TM, I've said that walking for me is like a marathon for a normal 
person.  After 50 feet or so, I'm soaked and feeling like I'd done a 5K 
marathon - or what I would think it would be like.  Even doing dishes is a 
major taks anymore.  I know my heart rate increases by walking or doing 15 
minutes of work and it takes several minutes for my heart to calm down to a 
normal pace.
I think with TM, it is a resistance type of exercise - it takes so much more 
for us to move - so much more than before - and everything we do is a challenge 
and an exercise in determination.
That's my 2 cents worth.
Prayer and thoughts for each and every one,
Candy K.

-Original Message-
From: [EMAIL PROTECTED]
Sent: Jul 18, 2007 8:12 PM
To: tmic-list-at-eskimo.com tmic-list@eskimo.com
Subject: [TMIC] osteoporosis

Rosalie,
After 18 mos with TM, my PCP sent me to an Endocrinologist for a thorough 
osteo blood work- up to go along with my bone density test.  I told him of my 
concern that I wasn't getting any weight bearing exercise and he said that 
standing 45 minutes a day was sufficient. I was confident that my time in the 
kitchen each day met that requirement.  I can walk, but walking 45 minutes at 
a time would be impossible.  Isn't it nice to know that the whole day of 
walking and standing counts for something?
Patti - Michigan



Candy K.

Re: [TMIC] osteoporosis

[cakalley]

BALANCE - at least I can still spell it.  Sometimes I find myself going back 2 
or 3 steps before I can go forward 1 step.  I don't use a cane in the house 
unless its a REALLY bad day.  But, THANK GOD for walls and furniture - I 
usually have a bruise on my shoulders from careening off the walls.  I moved 
here in September and I'm sure some of my neighbors thought I was the biggest 
drunk they ever saw and a VERY SLOW drunk at that!  I maybe slow, and I may 
stumble, stagger, and bounce off walls, but I evntually get to where I'm going. 

I'm having my carpeting removed because I keep spilling things and I can't keep 
the carpet clean because vacunming is just too much for me let alone a carpet 
cleaner!  I sure can't afford a carpet cleaner to come in every week or two. 
   
The balance thing is an issue with me because I use to do ballroom dancing.  I 
still turl but not intentionally. (My PT said that the dancing that I use to do 
may be why my balance is better than she expected).  One day instead of just 
being able to spin on my toes as I use to do to change direction, I had my 
bad leg planted and used my good leg to do a circle with very small steps!  
I just had to laugh at myself - it was as if my bad leg was glued to the 
floor!
 
I've found that I have to concentrate and focus on where I'm going - it seems 
to help my balance!  But, if I let just one more thought into my head, I start 
staggering, stumbling and careening off the walls.  I sure can't multi-task 
anymore especially when I'm walking! 

Well, I've bent your ear enough.

Prayers and thoughts,
Candy K. 
-Original Message-
From: Regina Rummel [EMAIL PROTECTED]
Sent: Jul 18, 2007 8:54 PM
To: cakalley [EMAIL PROTECTED]
Subject: Re: [TMIC] osteoporosis

Candy, Rosalie, All.
  You describe exactly how I feel...
  Going for a walk, a cane on my right hand, and holding on to my daughter's 
 arm on the left is the only way I can walk the two long blocks down the 
 street and back, collapse on the chair, gasping, and feeling as if I had 
 climbed Mount Everest...
  At physical therapy, they push me really hard, as my doctor prescribed, and 
 I am having the worst time with these balance exercises.  I don't understand 
 how balance can improve when our feet are numb and throbbing, etc. and as in 
 my case, feeling a combination of a little dizziness and vertigo.   What do 
 you do about balance?
  Monday's physical therapy really done me in.  
  As far as the osteoporosis, I don't even want to get the density test 
 because I know I'm in bad shape, I don't want to hear it.  All I have to do 
 is look at my shrinking wrists.  Yikes!!!
  It's 5:46PM and I haven't done my exercises today.  Bad girl am I.  
  All right, I'll do them now.  Or maybe not.  Yes, I will!
  Thank you for lending my babbling your ear, and please tell me what you do 
 to work on your balance.
  R
   
   
  

cakalley [EMAIL PROTECTED] wrote:
  Since TM, I've said that walking for me is like a marathon for a normal 
 person. After 50 feet or so, I'm soaked and feeling like I'd done a 5K 
 marathon - or what I would think it would be like. Even doing dishes is a 
 major taks anymore. I know my heart rate increases by walking or doing 15 
 minutes of work and it takes several minutes for my heart to calm down to a 
 normal pace.
I think with TM, it is a resistance type of exercise - it takes so much more 
for us to move - so much more than before - and everything we do is a 
challenge and an exercise in determination.
That's my 2 cents worth.
Prayer and thoughts for each and every one,
Candy K.

-Original Message-
From: [EMAIL PROTECTED]
Sent: Jul 18, 2007 8:12 PM
To: tmic-list-at-eskimo.com 
Subject: [TMIC] osteoporosis

Rosalie,
After 18 mos with TM, my PCP sent me to an Endocrinologist for a thorough 
osteo blood work- up to go along with my bone density test. I told him of my 
concern that I wasn't getting any weight bearing exercise and he said that 
standing 45 minutes a day was sufficient. I was confident that my time in the 
kitchen each day met that requirement. I can walk, but walking 45 minutes at 
a time would be impossible. Isn't it nice to know that the whole day of 
walking and standing counts for something?
Patti - Michigan



Candy K.




Candy K.

[TMIC] My experience with TENS and AMANTADINE

[cakalley]

It has now been almost 2 weeks since I got my TENS unit and also started taking 
AMANTADINE and I am feeling so much better.

The TENS unit seems to not only help the pain in my back and shoulders, but I 
am not experiencing as many spasms in either my R leg or L hand/arm.

I am taking the AMANTADINE along with the L-CARNATINE and I seem to have more 
endurance - not my normal but so much more than last month.  I removed the 
wallpaper in my bathroom and although it took me 2 1/2 days working in 15 - 20 
min. spurts, I am NOT curled up with spasms and pain nor exhusted to the point 
of sleeping all day - just my afternoon nap between 2 - 4 and sleeping my 8 
hours at night.

I just wanted to share my experiences with everyone.  I'm so thrilled with the 
improvement.  I never thought I would get to this point.

Candy K. with just my 2 cents worth.

Thoughts and prayers to each and everyone.

Candy K.

[TMIC] TENS, Amantadine Pain fatigue

[cakalley]

I went to my neurologist today. I told him that I had been using one
of those electronic ab exercisers and told him that it has really
helped not only with the pain in the lower back but also the spasms
seem to have been reduced. My neurologist asked if I had had any
problems which I have because I have to turn the ab exerciser around
and then the controls are on my back and occasionally when I'm
sitting in my recliner and move, the buttons are depressed and I get
a full gult and it hurts instead of helping. My neurologist then
prescribed a TENS unit.
I also asked my neurologist about the medicine Amantadine for
fatigue. I told him that I had been taking L-Carnitine and it has
helped with the fatigue but I wanted more (never satisfied with
improvements, I'm always wanting more! LOL). My neurologist
suggested Provigil but he said it was expensive and he didn't have
any samples and seeing as how he wasn't sure if it would help. So he
prescribed Amantadine.
I took my my Journal of The Transverse Myelitis Association with me
and he took the time to scan it. He also seemed interested in a
couple of articles and asked where I had gotten it and I told him
that I had enlisted in a couple of websites for TM.
My neurologist did warn me that Amantadine might cause halucinations
which I told him I already had halucinations because I always think I
can do more than I can. The body just won't keep up with the mind
and my memory of what I use to do.
I did tell my neurologist that if I did have problems, I would let
him know immediately.
Well, I've written my novel for today... Wishing everyone a pain free
day/night.
Candy K.


Candy K.

RE: [TMIC] from Gary

[cakalley]

Larry, I agree with you regarding the spinal tap - why after three years for a 
spinal tap?  I thought the spinal tap was only done at the beginning which if 
TM is still active, some kind of protein is found.  MRI's will show where the 
scar tissue is on the spine and if any new leisons have appearred and then the 
spinal tap to confirm another episode of TM.  That's what happened in my case 
at least and what was explained to me.

Of course now, any MRI includes a full head and spine due to possibility of MS. 
 But, I'm not scheduled for another MRI until next year.  Really when I go see 
my Neuro now, it's the basic test of sticking with a pin and seeing me walk 
without my walker or cane which I can do for a few steps. He also fills 
prescrips if needed.  All of which takes about 10 minutes but other than paying 
my co-pay so he can pay his bills, I wonder why I am going every 3 months?

Candy K.


-Original Message-
From: Larry Throne [EMAIL PROTECTED]
Sent: Jun 25, 2007 9:39 PM
To: [EMAIL PROTECTED], tmic-list@eskimo.com
Subject: RE: [TMIC] from Gary



What ever you do, stay flat on your back as long as you can.  After my first 
one no body told me to stay down and I reached to the end of the bed to get 
something and Bam! I thought someone shoved a hot ice pick in my brain.  That 
was over thirty years ago and I still remember that pain!  Other than that, I 
had several others over the next few weeks and even the next few years.  I 
think I have had 8 or 9 total and none of the others were painful at all.  
Mostly discomfort.  

I don't know why he insist on one now, I would think a MRI would make a better 
diagnostic tool?  

Good luck though.  Larry in Oklahoma where I am feeling better.  It's amazing 
what a couple of rounds of cipro will do for you






Larry Throne, MSW

From: Wendy [EMAIL PROTECTED]
To: 'TMIC List' tmic-list@eskimo.com
Subject: RE: [TMIC] from Gary
Date: Mon, 25 Jun 2007 22:23:33 +0200

.shape{;}p.MsoNormal, li.MsoNormal, 
div.MsoNormal{margin:0in;margin-bottom:.0001pt;font-size:12.0pt;font-family:'Times
 New Roman';}a:link, 
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span.MsoHyperlinkFollowed{color:purple;text-decoration:underline;}span.EmailStyle18{font-family:Arial;color:navy;[EMAIL
 PROTECTED] Section1{size:8.5in 11.0in;margin:1.0in 1.25in 1.0in 
1.25in;}div.Section1{page:Section1;}

Hi Gary:

 

The spinal tap wasn’t so bad.  Just be sure to drink plenty of water 
afterwards to minimize a headache.  I did have a bad headache for two or three 
days, but it was worth getting some answers.  

 

Just my two cents….

 

Wendy in NJ

 

From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Tuesday, June 26, 2007 4:15 AM
To: TMIC List
Subject: [TMIC] from Gary

 

Thanks to all who gave an input about fatigue.  I went to my neurologist today 
but did not accept a prescription at this time.  I think I'll try some of the 
non-prescription suggestions including trying to rest more. I do work 
full-time and clean our church for three hours twice a week plus keep up a 
house.  

 

There is another issue about which I would like some thoughts from others:

 

While in the hospital three years ago the diagnosis was TM.  I was never 
referred to the neuro who made the diagnosis as far as follow-up.  I just went 
to my primary physcian who just said there is no treatment.  After two years I 
asked if he would refer a neuro and he did.

 

Well, the neuro was flabbergasted that I had no follow-ups so ordered spinal 
and brain MRIs and the spinal was the only on the showed the old lesion--no 
change in two years.

 

I had another brain MRI last week and today was told no lesions.

 

However, the neuro still won't accept firmly a TM diagnosis and wants me to 
have a spinal tap because if it is positive I can take monthly IV's to help 
prevent any further damage.

He said he hopes I have just had an isolated incident brought on by a virus 
but, of course, won't say that is the case so wants the spinal tap but won't 
twist my arm but let him know and he will order it.

 

So, has anyone had anything similar happen?  What would you do?  A spinal tap 
doesn't sound fun.  Could it create further problems?

 

Sorry to be so wordy.

 

Thanks,

Gary in Michigan



Like puzzles? Play free games  earn great prizes. Play Clink now.


Candy K.

RE: [TMIC] fatigue

[cakalley]

I take 2 B comlex vitamines plus 2 L-Carnitine and 2 Surper Guarana tablets 2X 
aday.  They have helped but the fatigue is always present, expecially after 
feeling good and then overdo it!  It now only takes half the time to recoup - 
usually a day where before the above it would be 2 or 3 days.

I do believe that fatigue is just another symptom of TM.

Candy K.

-Original Message-
From: Larry Throne [EMAIL PROTECTED]
Sent: Jun 24, 2007 6:42 PM
To: [EMAIL PROTECTED], tmic-list@eskimo.com
Subject: RE: [TMIC] fatigue



    





I take 100mg provigal 2x daily.  Works fairly well but is not a magic potion 
by any stretch of the word.

Larry in Oklahoma where I guess I am fighting a uti, I feel horrible!






Larry Throne, MSW

From: [EMAIL PROTECTED]
To: TMIC List tmic-list@eskimo.com
Subject: [TMIC] fatigue
Date: Sun, 24 Jun 2007 17:17:51 -0400


It is probably too late to be writing this since my neuro appt. is in the 
morning but I wanted to ask:  has anyone had any type of meds that actually 
helped with fatigue?
 
I read on this list from several still talking about their fatigue so I know 
it is a problem with many as it is me.
 
I am still working and, as my Dr. says, I am in limbo (still o.k. enough to 
work yet having a hard time doing it but not bad enough for disability). 
 
 Prescriptions I have tried have only been for spacisity and didn't help with 
fatigue.
 
Any ideas I could present to him?
 
Thanks,
 
Gary in Michigan (hot weather!)


Make every IM count. Download Messenger and join the i’m Initiative now. It’s 
free.


Candy K.

Re: [TMIC] Med marijuana

[cakalley]

I actually thought that we had an over-active immune system - it's on and 
doesn't know when to stop which causes the immune system to attack different 
parts ofallergic t our body which our immune system doesn't reconize as a part 
of the whole body and not an outside invader.

I attribute my hay-wire immune system to all the steriods I've had to take over 
the years due to being allergic to so many anti-biotics.  The steriods shuts 
the immune system down, then when you go off the steriods, your immune system 
kicks back in.  Like a light switch, after a while of so many off/on's it wears 
down and BANG your immune system goes and attacks anything in sight - with TM 
it's the sheath around the spinal cord - with colitis it's the colon, etc. 

Candy K.
-Original Message-
From: [EMAIL PROTECTED] [EMAIL PROTECTED]
Sent: Jun 20, 2007 5:09 PM
To: [EMAIL PROTECTED] [EMAIL PROTECTED], [EMAIL PROTECTED]
Cc: tmic-list@eskimo.com
Subject: Re: [TMIC] Med marijuana


 You might be interested in this:
 Marijuana use weakens the immune system. 

e specially in view of the fact that most of us seem to have weakened immu 
ne systems.

I don't believe that article/book-  ITS  BGUS !!!  

Actually, I read recently the cannabinoids may benefit one's normal immune 
system.

TM is caused by a hyper- active immune systems- Auto-immune process.  That's 
why we are treated initially with cortisone, to decrease the immune response.

Hope that staightens you out.

F



Candy K.

[TMIC] Relief for backache

[cakalley]

I just have to pass this on.
Living here in FL and the rainy season being the worst, except for the cold, 
for my back aching which I suppose is due to barametric pressure changes.  I 
can tell when it's going to rain within a couple of hours within a 50 mile 
radius.

I have purchased all kinds of pillows, massages, etc. But I think I finally 
found something - an ab belt that sends electrical impulses supposely to work 
your abs.  Well, I turned it around and used the pulsing on my back.  What a 
relief, instantly!  I suppose that this works something like the medical tims 
but unlike the price of tims pads, the ab belt only cost $20 for purchase and 
shipping.

Now if I could find something for the sunburn feeling on my legs and the 
tingling in my left arm/hand and feet!  I'm never happy LOL!

Candy K.



Candy K.

Re: [TMIC] Relief for backache

[cakalley]

Thee name is ABGYMNIC and I purchased it from ebay.  They are found under 
Health  Beauty, Other Massagers or you can put in New Ab Energizing Electronic 
Muscle Belt Fitness System.

There are several and different types under Other Massagers but the one I got 
was 9.99 plus 9.99 shipping.

So far I am very happy with it.

Hope this helps.

Candy K.

-Original Message-
From: Heather  Pieter [EMAIL PROTECTED]
Sent: Jun 15, 2007 4:30 PM
To: cakalley [EMAIL PROTECTED], tmic-list tmic-list@eskimo.com
Subject: Re: [TMIC] Relief for backache

That sounds great.  I have low back pain too from previous herniated disc. 
What is the actual name etc brand etc of what you are using?

Thanks,
Heather in Calgary

- Original Message - 
From: cakalley [EMAIL PROTECTED]
To: tmic-list tmic-list@eskimo.com
Sent: Friday, June 15, 2007 12:24 PM
Subject: [TMIC] Relief for backache


I just have to pass this on.
 Living here in FL and the rainy season being the worst, except for the 
 cold, for my back aching which I suppose is due to barametric pressure 
 changes.  I can tell when it's going to rain within a couple of hours 
 within a 50 mile radius.

 I have purchased all kinds of pillows, massages, etc. But I think I 
 finally found something - an ab belt that sends electrical impulses 
 supposely to work your abs.  Well, I turned it around and used the pulsing 
 on my back.  What a relief, instantly!  I suppose that this works 
 something like the medical tims but unlike the price of tims pads, the ab 
 belt only cost $20 for purchase and shipping.

 Now if I could find something for the sunburn feeling on my legs and the 
 tingling in my left arm/hand and feet!  I'm never happy LOL!

 Candy K.



 Candy K.



 -- 
 No virus found in this incoming message.
 Checked by AVG Free Edition.
 Version: 7.5.472 / Virus Database: 269.8.17/850 - Release Date: 6/15/2007 
 11:31 AM

 



Candy K.

Re: [TMIC] Relief for backache

[cakalley]

I also notice by using today, not only is the pain gone or hardly noticiable 
BUT I seem to be walking better and standing straighter!  My neighbor noticed 
also that I'm standing straighter.

Candy K. 

-Original Message-
From: Heather  Pieter [EMAIL PROTECTED]
Sent: Jun 15, 2007 4:30 PM
To: cakalley [EMAIL PROTECTED], tmic-list tmic-list@eskimo.com
Subject: Re: [TMIC] Relief for backache

That sounds great.  I have low back pain too from previous herniated disc. 
What is the actual name etc brand etc of what you are using?

Thanks,
Heather in Calgary

- Original Message - 
From: cakalley [EMAIL PROTECTED]
To: tmic-list tmic-list@eskimo.com
Sent: Friday, June 15, 2007 12:24 PM
Subject: [TMIC] Relief for backache


I just have to pass this on.
 Living here in FL and the rainy season being the worst, except for the 
 cold, for my back aching which I suppose is due to barametric pressure 
 changes.  I can tell when it's going to rain within a couple of hours 
 within a 50 mile radius.

 I have purchased all kinds of pillows, massages, etc. But I think I 
 finally found something - an ab belt that sends electrical impulses 
 supposely to work your abs.  Well, I turned it around and used the pulsing 
 on my back.  What a relief, instantly!  I suppose that this works 
 something like the medical tims but unlike the price of tims pads, the ab 
 belt only cost $20 for purchase and shipping.

 Now if I could find something for the sunburn feeling on my legs and the 
 tingling in my left arm/hand and feet!  I'm never happy LOL!

 Candy K.



 Candy K.



 -- 
 No virus found in this incoming message.
 Checked by AVG Free Edition.
 Version: 7.5.472 / Virus Database: 269.8.17/850 - Release Date: 6/15/2007 
 11:31 AM

 



Candy K.

Re: [TMIC] grocery delivery

[cakalley]

OK here's another 2 cents from m

Where is it that you live - city, state, zip?  Maybe each of us can do some 
searching and find something to help you and those in your building.

OK you say some can do and others can't and they have to pay outrages price.  
You seem to have repore with your neighbors, gather those that have been 
paying, and those that can do, and once a week you all have your grocery list 
together; then, put all lists together, have one of the special priced people 
get and deliver then everyone pays a portion of the delivery fee.  OR, as I 
sure some of those that can do need extra money and would be happy to do it for 
a reasonable fee.  To me that seems like a win/win situation for all concerned.

Also, if you have had neighbors die, hopefully not from starvation, I hope 
someone in the state or federal organization investigated!

How helped you get in the building you are in?


-Original Message-
From: Akua [EMAIL PROTECTED]
Sent: Jun 13, 2007 3:30 PM
To: cakalley [EMAIL PROTECTED]
Subject: Re: [TMIC] grocery delivery

Akua,

Please don't bristle - we are just trying to help.  I know how your 
feel about more to do, but sometimes it does take persistance.  I 
know that there are days where you don't feel like being persistant, 
but those days that you do, make a list of people and places to 
call.  Then on another day when you once again feel like being 
persistant, start calling.

Is there a Meals on Wheels?

Yes, there is. but that's not shopping help


If you're in a building for elderly and disabled, surely someone 
should, would, know of an answer.

Again i reported on what the building had to say. folks who 
can do, others who can't pay the onerous charges and others, like my 
neighbor, die.



Another thought, try calling local churches.

Here in Naples, there is an organization for the elderly and they 
sometimes help the disabled.

Just a few thoughts.

Candy K. 

-Original Message-
From: Akua [EMAIL PROTECTED]
Sent: Jun 13, 2007 2:15 PM
To: tmic-list@eskimo.com
Subject: Re: [TMIC] grocery delivery

Here in Montreal we can phone in an order to  P.A. Supermarche and
they deliver free- we do have to pay for the food.

F

You're fortunate. That's sadly not an option here.
If anyone knows of a place in my city, I welcome it, but other than that
I must say that I'm  very taken aback  that my report of the
unavailability of something is met with
more tasks as if  I have not already, sought, looked, asked.

Surely it must... It doesn't here. If you know where it does, I
welcome the information. If not, I bristle at the obvious.

I met a entrepreneur who was starting a delivery business--- he was
delivering my order from an Indian restaurant. He confirmed that few
restaurants offered delivery, hence his business to
deliver for restaurants.  I asked him about grocery delivery--- not
something the culture deems important. He knew of none. (He's a
native, I've only lived here the length of my TM).

I live in an 23- story apartment buidling  designated for the
disabled and elderly. My state of being is new to me, but not to
them. I searched and could not find., I asked and no one had an
answer.  I lost a lot of weight between the lack of anything remotely
edible or healthy at the nursing home and my finding my way in this
apartment.  As my short term PT said, the less to have to move by
hand.

The management office offered the $20/hour plus gas person and the
onsite twice weekly rip off  lady.

There are other experts the Center for Diability Rights, the Center
for Independent Living. Neither knew of such services.

Akua
--
http://www.healrecover.blogspot.com
http://www.akualezli.blogspot.com



Candy K.


-- 
http://www.akuadesigns.etsy.com
http://www.artfarm.com
http://www.absolutearts.com/portfolios/a/akualezli/
http://www.zencrochet.blogspot.com/
http://www.healrecover.blogspot.com
http://www.akualezli.blogspot.com


Candy K.

Re: [TMIC] grocery delivery

[cakalley]

Local TV stations are another resource for agencies.  

That is why I asked Akua where she lived.  Maybe with some of TM'ers working 
together, we can compile a list and post it for all to benefit.

There are agencies out there that are overlooked or unknown unless someone 
stumbles over them and then spread by word of mouth.


-Original Message-
From: Westgold [EMAIL PROTECTED]
Sent: Jun 13, 2007 5:04 PM
To: Sandy Heidel [EMAIL PROTECTED], tmic-list@eskimo.com
Subject: Re: [TMIC] grocery delivery

thanks for posting this, Sandy, this is very valuable info.  Social service 
agencies usually have lists of places like this in the various areas. 
Church groups  Synagogues also often have lists of places to help, as well 
as volunteers who might help.  Did everybody get my email Grocery Delivery 
For All that I sent an hour or so ago?  If not, please look in your bulk 
folder for it -- I give a link where anyone can order groceries on the web 
for free delivery, no matter where you live.  If you didn't get it through 
the list, please send me an email  I'll send it to you personally. 
[EMAIL PROTECTED]

take care -- Michelle



- Original Message - 
From: Sandy Heidel [EMAIL PROTECTED]
To: cakalley [EMAIL PROTECTED]; Akua [EMAIL PROTECTED]
Cc: tmic-list@eskimo.com
Sent: Wednesday, June 13, 2007 4:52 PM
Subject: Re: [TMIC] grocery delivery


I have not joined in on this since going to the grocery store is still one 
of those things I CAN do one day a week. But in many Wisconsin communities 
they have a program called Market Basket or something like that.
 If I understand it correctlyyou get a large box of groceries at a 
 discount and there are volunteers who deliver them. I think its set up 
 that you can pick them up for yourself. But when I was looking at it a few 
 years ago they were looking for volunteers who would not only belong to 
 the program but also deliver the boxes to those who could not get out.
 Also...in some areas, more everyday, there are CSAs.  Those are  Community 
 Supported Agriculture farms that grow vegies and fruits for members who 
 pay up front and get a box of fresh produce every week.  Its like having 
 your own garden without the dirt, sweat, blisters and bending.  The ones 
 around cities I understand deliver to your door...more for working people 
 who like to come home and find a cooler with fresh vegies on the back 
 steps than disabled folks who cant travel...but you get the deal.
 My two cents,
 Sandy in hot, hot, too hot Wisconsin.
 Did I mention its rather hot today?
 



Candy K.

Re: [TMIC] grocery delivery

[cakalley]

Another resource for help - the local hospital's social services department.

-Original Message-
From: [EMAIL PROTECTED] [EMAIL PROTECTED]
Sent: Jun 13, 2007 5:25 PM
To: Akua [EMAIL PROTECTED], tmic-list@eskimo.com
Subject: Re: [TMIC] grocery delivery

When we are in Maine, my Honey volunteers at Freeport Comunity Services. She 
volunteers at the thrift shop, but across the hall is a woman who organizes 
the volunteers.  Bowdoin College college in the next town, Brunswick, has a 
requirement of volunteering for graduation.  Many local high school students 
volunteer- it looks great on your college application.  When we needed the 
sofa moved to another room, we just called.  Three High School Football 
players arrived after school several days later, and it was done in 5 minutes.

I'm sure if I asked, they would find someone to do my shopping.

Does your town have a Department of Community Services?  Call the town Hall 
and ask for help.  Or call a local High School and ask the Home Economics 
teacher for help- she could find some students to shop for you.  Call your 
local hospital, and ask to talk with social worker, and ask for help.

Are you religious?  Call your local church and ask for help!! Call Salvation 
Army!!

Are you a veteran?  Call your local VFW group!  Or call the local Veteran's 
Administration.

Call the local M.S.  Society and ask for help

Call your local police department, and Fire depatment, too, ask for help.

My finger hurts- have to stop.

F



Candy K.

[TMIC] Helpful Link

[cakalley]

I just found a link that maybe helpful for some.

http://www.blvd.com/



Candy K.

Re: [TMIC] Allen Rucker on Montel Williams Tuesday June 12

[cakalley]

I agree that Allen and his book is a good start.
I also agree with you, Akua, about the support that Allen has around him.  
I think that some of us that are dealing with TM alone - no significate other, 
spouse, family, or job we can continue on during our change in life - need to 
write about our daily opportunities.

I am planning on attending the regional meeting in Tampa, FL, on June 23.  This 
is something that I plan on addressing - HOW DO WE GET THE WORD OUT ABOUT TM 
and HOW DO WE REALLY GET MORE KNOWLEDGE TO THE MEDICAL FIELD (DR., NEURO, 
NURSES, HOSPITALS, X-RAY TECHS, PT AND OT THERAPIST).  Also, how do we get the 
government to back more research in spinal cord injuries and also what is 
causing TM and MS?

By WE, I mean us TM'ers and the caregivers.  MS is much more known and yet 
while TM is a relative of MS, TM is so ignored or ignorant in knownledge.

I do believe in the message that the Montel show was trying to convey - 
individuals define themselves no matter what life throws at you.  You need to 
learn to take what God has dealt you and help whomever and wherever you can.  

I believe in the philosphy that we all are put on this earth for a reason, we 
may never know why and it may not be immediate in the changing.  We all are 
just one small piece of the puzzle and the whole picture isn't clear until all 
the pieces are put together as a whole.

Well, that's my 2 cents on this subject.

Candy K.

-Original Message-
From: Akua [EMAIL PROTECTED]
Sent: Jun 12, 2007 11:32 AM
To: tmic-list@eskimo.com
Subject: [TMIC] Allen Rucker on Montel Williams Tuesday June 12

A friend said to me o look at him. See I told you  you should write a 
boook about this! See how good he is doing. And I reminded her that 
he  was married, in California, had insurance and support and 
finally--- took 8 years or so to write about it.
But I'm glad he's out there--- something and someone to act as 
reference point other than
Christopher Reeves
Akua



Allen Rucker, author of THE BEST SEAT IN THE HOUSE, will appear on 
THE MONTEL WILLIAMS SHOW on Tuesday, June 12th to discuss his book.
http://www.montelshow.com/show/today/tuesday/

Allen is an award-winning television writer/producer and a husband 
and father of two.  Allen says that one morning 10 years ago he woke 
up and was unable to move. He eventually became paralyzed for life by 
a rare condition called Transverse Myelitis. After a period of 
depression Allen says he began to regain control of his life and 
started writing. He is now a New York Times best-selling author!
-- 
http://www.healrecover.blogspot.com
http://www.akualezli.blogspot.com


Candy K.

Re: [TMIC] ot

[cakalley]

When I asked my neuro, he said that (I'm paravasing)it depends on how deep the attack on the myeli, the shaft surrounding the spinal cord, and the degree of scar. My C4 - T2 was on my second episode and had already been treated with steriods. All of my leisions were difficult to see on MRI and overlooked on the first couple. Thats why I had 4 MRI's before finding. Maybe that's the difference? Everyone is differant even with other diseases - some people have worst attacks of some disesase, some people react to different meds than others. 

God has made each and everyone of us similiar but DIFFERENT - we are like snowflakes - unique and beautiful in our differances.

Candy K.
-Original Message- From: [EMAIL PROTECTED] Sent: Jun 10, 2007 10:30 PM To: [EMAIL PROTECTED], [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: Re: [TMIC] ot 

In a message dated 6/10/2007 4:32:37 PM Eastern Daylight Time, [EMAIL PROTECTED] writes:
I have multiple levels. One at C4 to T2 the other at T10 to T12. The T10 - T12 leison made me paralyzed from bra line down. I went thru PT/OT and walked with a walker and was "hell on wheels" in a wheel chair. The C4 - T2 made me a quad. With Plasma Exchange (PLEX) and starting at square one with PT/OT after 6 months I walk with a walker but have no strength for the wheelchair. I can walk25 - 30 feet but need to stop and rest before going on. I have an electric scooter for those times I need to goout and about. The 2nd episode really zapped me of my strength, stamini and durance. I work in burst of 10 - 15 min. before I need to rest which maybe from 20 min to hours or daysdepending on what I have been doing. Shopping for groceries is usually a day and halfRR.

I just can't get my mind around the fact that there are paraplegics who are truly paralyzed and those that can walk. There are quadraplegics who are also the same. It seems as though TM ought to stay the same all of the time...meaning I ought to be able to walk a bit like some of you. I don't know if it is better to be one of the "walking wounded" or not. I don't mean it to sound like I think any of you have it easier than those of us in wheelchairs 24/7. I just don't understand the various ways the same disease can affect us.

Is there anyone out there who can explain it better to me?

Love you,
Jude


2 Corinthians 4:17NLT


See what's free at AOL.com. 

Re: [TMIC] Pain or no Pain

[cakalley]

OH I WISH IT WAS POSSIBLE TO HAVE TM AND NO PAIN - I have such excruciating pain in my lower back all the time - except when I first wake up and only move my eyelids - when I start moving in the morning the pain in the lower back just keeps esculating - at night when I'm going to go to sleep it takes a loritab and 2 Tylenol PMs plus a heating pad and at times tears or a glass of wineto get me to sleep.
I've always had a high pain tolorance and I can put up with the other painscaused by spasmsbut this back ache is horrible and at times it takes all I have to just "live with it".

Candy K. 
-Original Message- From: Regina Rummel <[EMAIL PROTECTED]>Sent: Jun 11, 2007 10:34 AM To: tmic-list@eskimo.com Subject: [TMIC] Pain or no Pain 
Most of us suffer awful pain. But is it possible that some of us do not have any pain? I don't mean little aches here and there, I mean real, excruciating pain.
Can you be diagnosed with TM, and have no pain? Is that possible?
Regina 

Re: [TMIC] ot

[cakalley]

In my reply to Jude, I forgot to mention that I also have to "think" about moving but my chant is "heel, toe, heel, toe". Also when going up/down stairs, it's "good up, bad down" because my R leg is worst than my L - the R needs constant thought to move while the L is only on "bad" days. 
I also have problems that what I did yesterday, isn't always what I can do today or tomorrow. Bending over at times causes whole body spasm which is "great fun"!
TM causes everyday to be an adventure in living and moving.
Candy K.

-Original Message- From: Diane <[EMAIL PROTECTED]>Sent: Jun 11, 2007 10:12 AM To: [EMAIL PROTECTED], [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: Re: [TMIC] ot 


Jude, I'd love an explanation too. I have no feeling below the waist (except pain) but I can walk. When I learned to walk again after TM (8 yrs.), the concentration required to move my damn legs wasvery intense. After all this time, I still walk with my head/mind. The concentration is not as deep but I know I'm still chanting "lift, move, lift, move". Some days, I'm still amazed, and thankful, that I can get from point A to point B. It's exhausting to walk 20-30 ft. I use a canebutthere are days,when I can't get there without my walker.
In the last few months, something new has been added. I bend at the waist and cannot straighten up for a while. My neuro says that the spinal cord thins where there is damage and causes it to bend. All I can do when that happens is to lie on my side until it passes. Anyone else have this?
Diane in Canada



I just can't get my mind around the fact that there are paraplegics who are truly paralyzed and those that can walk. There are quadraplegics who are also the same. It seems as though TM ought to stay the same all of the time...meaning I ought to be able to walk a bit like some of you. I don't know if it is better to be one of the "walking wounded" or not. I don't mean it to sound like I think any of you have it easier than those of us in wheelchairs 24/7. I just don't understand the various ways the same disease can affect us.

Is there anyone out there who can explain it better to me?

Love you,
Jude


2 Corinthians 4:17NLT


See what's free at AOL.com. 

Re: [TMIC] Testing

[cakalley]

I received your message.
However, I am also in the yahoo group for TM and I haven't been receiving emails from them. For some reason, my yahoo emails were "bouncing" and I had to go thru steps to reinstate account!
Sometimes "shit happens" and systems have bad days also.

Candy K.

-Original Message- From: Heather  Pieter <[EMAIL PROTECTED]>Sent: Jun 10, 2007 10:31 PM To: [EMAIL PROTECTED], tmic-list@eskimo.com Subject: Re: [TMIC] Testing 


Got you loud and clear here.

Heather in Calgary 

- Original Message - 
From: [EMAIL PROTECTED] 
To: tmic-list@eskimo.com 
Sent: Sunday, June 10, 2007 6:28 PM
Subject: [TMIC] Testing

I just realized that I hadn't been getting mail from the list. Sometimes we go through quiet spells, so I don't always think anything if there is no mail for a day or two. But I realized it had been longer, and looked on the archives -- and I have been missing it! So this is a test -- if it doesn't go through I will resubscribe. I had experienced a couple of time before getting kicked off due to some cyberspace glitch.


See what's free at AOL.com. 



No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.472 / Virus Database: 269.8.13/843 - Release Date: 6/10/2007 1:39 PM

RE: [TMIC] ot

[cakalley]

I had my 2nd just 4 weeks after my initial episode. Dr. Kerr and my neuro don't call it that - my first episode was just a continuation of my initial. But with that much time in-between, I call it my second! If I had a cold, recovered, and got another cold a month later isn't one continutal cold - not to me.
Candy K.

-Original Message- From: "Tim Holder (Work)" <[EMAIL PROTECTED]>Sent: Jun 11, 2007 1:20 PM To: tmic-list@eskimo.com Cc: tmic-list@eskimo.com, [EMAIL PROTECTED] Subject: RE: [TMIC] ot 



Could you all talk a little bit about the “2nd episodes?” I haven’t had a second episode. I’m wondering how far it was between the first one and second one. I understood from researching TM that 2nd episodes were relatively rare. But, it seems quite a few of you have had more than one. Maybe I should get my house really cleaned up…just in case. You are all so inspirational to me. I know that my symptoms are nothing compared to what many of you experience. So, I’m not going to complain about my minor aches and pains. 

Tim


Tim Holder
Worship Leader for 
Celebrate Recovery
[EMAIL PROTECTED]
(501)224-7171 ext. 1454
Fellowship Bible Church
1901 Napa Valley Drive
Little Rock, AR 72212-3913








From: cakalley [mailto:[EMAIL PROTECTED] Sent: Monday, June 11, 2007 8:28 AMTo: [EMAIL PROTECTED]Cc: tmic-list@eskimo.com; [EMAIL PROTECTED]Subject: Re: [TMIC] ot


When I asked my neuro, he said that (I'm paravasing)it depends on how deep the attack on the myeli, the shaft surrounding the spinal cord, and the degree of scar. My C4 - T2 was on my second episode and had already been treated with steriods. All of my leisions were difficult to see on MRI and overlooked on the first couple. Thats why I had 4 MRI's before finding. Maybe that's the difference? Everyone is differant even with other diseases - some people have worst attacks of some disesase, some people react to different meds than others. 



God has made each and everyone of us similiar but DIFFERENT - we are like snowflakes - unique and beautiful in our differances.



Candy K.

-Original Message- From: [EMAIL PROTECTED] Sent: Jun 10, 2007 10:30 PM To: [EMAIL PROTECTED], [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: Re: [TMIC] ot 


In a message dated 6/10/2007 4:32:37 PM Eastern Daylight Time, [EMAIL PROTECTED] writes:

I have multiple levels. One at C4 to T2 the other at T10 to T12. The T10 - T12 leison made me paralyzed from bra line down. I went thru PT/OT and walked with a walker and was "hell on wheels" in a wheel chair. The C4 - T2 made me a quad. With Plasma Exchange (PLEX) and starting at square one with PT/OT after 6 months I walk with a walker but have no strength for the wheelchair. I can walk25 - 30 feet but need to stop and rest before going on. I have an electric scooter for those times I need to goout and about. The 2nd episode really zapped me of my strength, stamini and durance. I work in burst of 10 - 15 min. before I need to rest which maybe from 20 min to hours or daysdepending on what I have been doing. Shopping for groceries is usually a day and halfRR.

I just can't get my mind around the fact that there are paraplegics who are truly paralyzed and those that can walk. There are quadraplegics who are also the same. It seems as though TM ought to stay the same all of the time...meaning I ought to be able to walk a bit like some of you. I don't know if it is better to be one of the "walking wounded" or not. I don't mean it to sound like I think any of you have it easier than those of us in wheelchairs 24/7. I just don't understand the various ways the same disease can affect us.



Is there anyone out there who can explain it better to me?



Love you,

Jude




2 Corinthians 4:17NLT





See what's free at AOL.com. 

Re: RE: [TMIC] ot

[cakalley]

I have multiple levels. One at C4 to T2 the other at T10 to T12. The T10 - T12 leison made me paralyzed from bra line down. I went thru PT/OT and walked with a walker and was "hell on wheels" in a wheel chair. The C4 - T2 made me a quad. With Plasma Exchange (PLEX) and starting at square one with PT/OT after 6 months I walk with a walker but have no strength for the wheelchair. I can walk25 - 30 feet but need to stop and rest before going on. I have an electric scooter for those times I need to goout and about. The 2nd episode really zapped me of my strength, stamini and durance. I work in burst of 10 - 15 min. before I need to rest which maybe from 20 min to hours or daysdepending on what I have been doing. Shopping for groceries is usually a day and halfRR.

Candy K.
-Original Message- From: Diane <[EMAIL PROTECTED]>Sent: Jun 10, 2007 1:46 PM To: natalie mizenko <[EMAIL PROTECTED]>, Transverse Myellitis Subject: Re: RE: [TMIC] ot 


This interesting. Wonder how many of us are affected in multiple levels ???
TMhit me at L-1/L-2 and I was paralyzed from the waist down. I learned to walk again for short distances 25-30 ft. with a cane or walker. However, I had other symptoms above the waist andmy neuro has confirmed that there are minute lesions the whole length of my spine. None of these symptoms cause disability - they're just annoying.
All in all, I am thankful TM was caught earlybefore severe damage occurred.
Diane in Canada

- Original Message - 
From: natalie mizenko 
To: Transverse Myellitis 
Sent: Sunday, June 10, 2007 10:32 AM
Subject: Re: RE: [TMIC] ot





Sally,
I was wondering what type of affect you have on your body in T6-T8? Numbness, pain? Are you able to walk. I've always wondered when folks get TM in 2 or 3 levels of the spine how it is. If you don't mind, I'm just trying to educate myself on TM. I have it from T12 down and in a w/c. Did you have Rehab in your state? I had to go from Arkansas to Texas for 7 weeks total. Thanks, Natalie



"[EMAIL PROTECTED]" [EMAIL PROTECTED] wrote: 

I live in Hawaii where it's usually in the 80's - or in cool weather, in the 70's (I know, spoiled, aren't I!) The only weather that bothers me is when it's cold - like when I went to California when it was in the 50's at night. I wore 3 pair of socks and 2 pair of sweat pants to bed. Even in Hawaii, I often wear socks around the house in the cool weather (we don't normally wear shoes in the house here, but leaves our shoes at the door).
Sally (T6 - T8, 2005)


Got a little couch potato? Check out fun summer activities for kids.

Re: Re: [TMIC] ot

[cakalley]

Yeah - iceberg feet and sunburn sensation from ankles to above knees.  The 
hotter I am from the shoulders up, the worst the sensations.  Then we get to 
add the muscle spasms - which get worst in the cold weather.  What a life!

When I get up to see St. Peter, I'm going to ask for a refund because whoever 
did my wiring must've been an apprentice with no one over seeing his work!

Candy K.

-Original Message-
From: [EMAIL PROTECTED]
Sent: Jun 9, 2007 7:23 AM
To: cakalley [EMAIL PROTECTED]
Subject: Re: Re: [TMIC] ot

But don't you have iceberg feet.thing, too? Man our bodies are screwed up. Rick
 
 From: cakalley [EMAIL PROTECTED]
 Date: 2007/06/09 Sat AM 12:46:04 EDT
 To: L T CHERPESKI [EMAIL PROTECTED],  [EMAIL PROTECTED], 
 Tmic-list@eskimo.com,  Kevin Wolfthal [EMAIL PROTECTED]
 CC: TM List tmic-list@eskimo.com
 Subject: Re: [TMIC] ot
 
 

Re: [TMIC] ot

[cakalley]

I found that wearing soxes makes my feet colder - and when I take my soxes off, they are damp like my feet are sweating but I feeling, sensation,as ifmy feetare in an ice bucket. Going barefoot has helped but I wear slip on cloth sandeles when I go out.
Candy K.

-Original Message- From: L T CHERPESKI <[EMAIL PROTECTED]>Sent: Jun 8, 2007 11:14 PM To: [EMAIL PROTECTED], Tmic-list@eskimo.com, Kevin Wolfthal <[EMAIL PROTECTED]>Cc: TM List Subject: Re: [TMIC] ot 



Same for me, Kevin. I was cold the entire first year of TM and had to wear one, sometimes two pair of sox on my feet. Now, I can't stand to have ANYTHING touch my feet - bare feet only for me at home anyway. Very strange.

Linda

- Original Message - 
From: Kevin Wolfthal 
To: [EMAIL PROTECTED] ; Tmic-list@eskimo.com 
Sent: Friday, June 08, 2007 9:43 AM
Subject: Re: [TMIC] ot
Extremes of heat OR cold affect me badly.Heat makes my fatigue worse, and generally feel weak.Cold causes my pain to be worse.Kevin[EMAIL PROTECTED] wrote: 
Robert Pall has asked the list to comment on the effects of hot weather on us with TM. I get exausted very fast when I get out in the hot weather. Now, part of this may or may not be due to medications. But I do take extra caution in hot weather. So should you. Rick
  
From: "Robert Pall" [EMAIL PROTECTED]
Date: 2007/06/08 Fri AM 11:29:29 EDT
To: [EMAIL PROTECTED], 
	tmic-list@eskimo.com
Subject: RE: [TMIC] ot

Rick,
	Interesting that you stated that hot weather is bad for us
TM'rs. I personally have not been able to pinpoint the weather as being
something that effects me...the only possible exception is that very
humid weather can make me feel worse. I would be interested if the group
commented on the effect that weather has had on themin the meantime
I hope everyone has a great summer!

Rob in Sunny New Jersey 

-Original Message-
From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]]

Sent: Friday, June 08, 2007 10:24 AM
To: tmic-list@eskimo.com
Subject: [TMIC] ot

Good morning tmiclist. Heres wishing everyone good health. Hoping that
June  weather makes everyone aware of how hot weather takes its toll on
us. Be careful those that have to work in it. Rick