Sadly, I am almost at year 8, and have also had an increase in pain over the
past years. I try not to admit very often, but cannot do so any longer.
A couple of years ago I went to a pain med doc and she was a bit too free
with the Vicodin for the pain in my back and leg. I'm not talking
Hi Sally,
My nerve pain is like I have an extremely painful sunburn while sitting in a
pool of ice. That's the freezing/burning for me. My lesion was at T8-10,
and this is the most painful from just above the waist to my toes. My torso
from about my bra strap to my waist is generally
Heather, I haven't had the particular type of pain mentioned (allodynia,
where something not usually painful, like clothes, causes pain). I have had
sensitivity in certain spots (middle of my back, top of my head, and my
knees),
but it is more a I am going to jump out of my skin if you
Rick
I think one of the best things for TM is to have an interest in something that
keeps us moving. It sounds like you are really enjoying those 100 acres and
all that they offer. Thanks for sharing - I envisioned the deer and wild
turkeys and smiled while reading your account.
Patti -
My husband is a 15 year diabetic and uses a Homedics percussion messager on his
legs every night while watching TV. He curls up on the sofa and does what can
be reached in that position then changes and curls up next to me and does the
other leg. I don't know if this would help you between
It's not just the 3 of them. I have exactly the same symptoms and problems
with clothes, breezes, fans, air-conditioning, sun, heat, pets, and
unfortunately human touches. I've learned to prepare for someone touching me
and forcing myself not to jump or pull away, but it still hurts. I grind
Barbara
You explain this very well. I am also on Neurontin and know when it is time
for my dose by how I feel. I increased my dose by changing from every eight
hours to every 6 hours. I just took one at 5.5 hrs because I felt the need.
We aren't junkies. We could quit our meds if it
I know a few of you have mentioned treating your pain with marijuana (or
derivitives thereof) and I can't help but wonder if it's really benefic ial
in the long run, considering the negative effect that it has on the immune
system? Have I been misled?
Sally,
I believe you have been
I'm also interested in Heather's question: how many people w/TM more than 3
or 4 years have gotten worse as time goes by?
Perhaps the question should be:
Are there any of us who have NOT had an increase in symptoms??
F
My daughter has not had an increase in symptoms. Although we have
noticed lately that she has been getting a few spasms, here and there,
but when she gets them she seems to be in a progression pattern and
steadily is getting more and more strength. They have her walking with
one forearm crutch at
Yes, the cough syrup.
I have a friend who has spinal cord damage from an accident and has
intermittent infections and inflammation. His ongoing problems are very much
like TM although caused by a specific trauma to the column and cord. His
brother and sister in law are both doctors,
dr said my vitial signs were great this time and when he called back about my
blood work
he said the readings were the best they have been in a long long
time.where he wanted them or lower.
asked him if he
thought the LOW DOSE Naltrexone had anything to do with it because it
Hello,
Thank you Barbara A. and Barbara H. and Frank for your answers. I had hoped
that the answer would be 'no' but thought I could get some 'yesses'.
I guess with myself being at year 4 come Sept. I will just have to keep on
doing what I'm doing and hope that the pain keeps at bay or at
I just replied to Gunny a message about 2 hours ago on Lyrica and it still
hasn't posted. Would there be a reason it hasn't?? Thanks, Natalie
-
Ahhh...imagining that irresistible new car smell?
Check outnew cars at Yahoo! Autos.
Did you hit 'REPLY ALL' or did you just hit 'REPLY' which would go directly to
him and not to the group?
I'm not sure if that would mean anything.
Heather in Calgary
- Original Message -
From: natalie mizenko
To: Transverse Myellitis
Sent: Monday, May 07, 2007 11:48 AM
Feb. 7, 2002 --- the night from hell Never, ever forget that date...
My problems are from the waist down. I cannot have a soft piece of cloth,
nightgown, etc... against my legs... awful pain... My neuro could not decide
if I have TM or MS so in December I started taking a shot of copaxone
Candis,
I have just heard about L-Carnatine. What is it used for?? Is it a more
natural drug???
Does it help with pain??
thanks
Trudy
_
From: Candis Kalley [mailto:[EMAIL PROTECTED]
Sent: Sunday, May 06, 2007 11:33 PM
To: [EMAIL PROTECTED]; [EMAIL PROTECTED]
Cc:
For the past few years I've had an increase in pain in almost all my joints as
well as part of my lower back, around L-3.
Dr Gott's column a few days ago mentioned that castor oil was good for such
pain(s).
Also, there is a new (to me) ointment called Castiva. I've been using it for
over a
Anybody else every try this??
Sandy,
I've been using Dextromethorphan for two or more years.
I use 60 mg twice a day.
Up till recently I used DexAlone- 30 mg gelcaps, #30 for $14., but the company
stopped making it, so now it needs to be compounded so costs $50. for #30
What dosage does
Too bad that TM isn't as well know as some of the other diseases.
I wonder if there are ways to make this happen?
Any ideas as to places we should write? funding efforts to promote?
This is month number 17 for me and I'm anxious to be finished with this.
I feel like a solution is close at
I am not sure of his dosage. But he swears by it.
Sandy
- Original Message -
From: [EMAIL PROTECTED]
To: Sandy Heidel [EMAIL PROTECTED]; TM list tmic-list@eskimo.com
Sent: Monday, May 07, 2007 2:41 PM
Subject: Re: [TMIC] Detromethorphan
Anybody else every try this??
Sandy,
I've
Trudy,
It is a vitamin - an amino acid - which supposely plays a rle in making fatty
acids available for energy in muscle tissue altho it has not been evaluated by
FDA. It is supposely an alternative to amantadine which is considered to be a
first-line treatment for MS TM related fatigue.
I have thought about writing to some of the talk shows - Oprah, Ellen, etc.
Maybe even Discovery Health with their Mystery Diagnoses segment. They
did have a segment on NEMO which is another disease that isn't common but
that is carried by females and passed to males.
Every time I see the
Gunny,
I have been on Lyrica for almost 2 years. Dr Kerr prescribed it for
me. I started out with 300 mg per day and since last October I have been
taking 450 mg.I cannot say if it helps pain because I am not really in
pain...I am in constant discomfort.Having said that Lyrica has been the
Have you tried Neurontin/Gabapentin or Lyrica for your pain?
Heather in Calgary
- Original Message -
From: Candis Kalley
To: Trudy ; [EMAIL PROTECTED] ; [EMAIL PROTECTED]
Cc: tmic-list@eskimo.com
Sent: Monday, May 07, 2007 1:55 PM
Subject: [TMIC] RE: L-Carnatine
Trudy,
After reading your intersting comments on this drug, I looked it up and can
only find DEXTROMETHORPHAN.
Comments, please
Yes, I am on 300mg of lyrica a day. But it numbs my legs almost too much and
I'm having trouble figuring out the dosage. I was on Neurontin for years..
my neuro thought I should try lyrica. I was just looking for something more
natural..
Thanks!
Trudy
_
From: Heather Pieter
Hi All,
I was trying to find information on the neuropathic pain we are all
experiencing since our TM attacks. I clump all the various problems such as
cold/burning/numb/stiff/screaming skin (I think that covers most of it) under
the term neuropathic pain. That is the term the Neurologist
Hi everybody -- has anyone ever tried Actiq (fentanyl) for TM pain? If so, how
does it work, and how much did you take? There's a big article about it in
Newsweek this week.
take care -- Michelle
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