I was diagnosed with TM two years ago.
20 years prior - probable MS
I think keeping a neurologist is paramount. New things happen every
day! My family doctor, gynecologist, orthopod had never heard (or
believe) in TM! So frustrating
I have constant banding, and would love to know if anyone has had any
luck with anything. (I do have a brace I wear to handle housework
(such as vacuuming), and it helps.
Susan
On Jan 16, 2013, at 11:57 AM, I Whiddett wrote:
On the subject of the need for a neurologist, I was discharged by
mine after two years on the grounds that there was nothing else to
be done to help me. This leaves me in care of my GP practice where
there is now no doctor with any knowledge of TM. Their only
function for me is to renew my prescription for Amitriptyline, as
prescribed by the neurologist 3 1/2 years ago at the onset of TM.
I'm really pleased to see the group is still here as I have been
wanting to ask if anyone is aware of a drug that helps specifically
with "banding" present 24/7 and intensifying in cold/hot weather.
I'm unable to go out in the present cold weather and I don't think
Amitriptyline helps at all, not even with sleeping any more. I'd
appreciate any advice.
Iris
On Wednesday, January 16, 2013, wrote:
We are talking about the need for a neurologist. I just saw mine
yesterday. For my pain he recommended a pain pump. I'm going to
have a trial pump put in to see if it will work for me. If it
does, they will implant a permanent one in my body, next to the
spine with a catheter leading out to my abdomen where the pump can
be refilled periodically. The medication last about six months
before it must be refilled.
I have so much pain because I have a broken leg that is not
healing. It's been almost 1 & 1/2 years. The pain is intense on
top of my TM pain. I'm taking strong medication to just get by.
Guess I 'talked' your ears off. Will go for now.
Judy in Michigan
In a message dated 1/16/2013 8:16:47 A.M. Eastern Standard Time,
[email protected] writes:
The description you gave sounds familiar. I didn't and could not
have gone back to my banking job. My biggest anxiety in the early
days of TM was my inability to think. It took four months before i
could read And longer to comprehend. I got stuck or stumbled on
words when trying to talk and literally sounded drunk. Had a hard
time between left and right. Couldn't follow directions. Got lost
in buildings, because I always turned the wrong way. Did things
backwards. I had to have a note for everything.
I worked hard to overcome those issues. I sat for hours reading
tmic and the TM forum. Typed with two fingers to write my posts,
tried for days to make a flow-chart, and even had a nine year old
come after school two days a week to play kids games and build
items with Legos.
I felt like the steroids fried my brain. I'm much, much better and
thank God everyday for the improvements.
Patti V - Michigan
Sent from my iPad
On Jan 15, 2013, at 10:44 PM, Dalton Garis <[email protected]>
wrote:
Cognitive problems, did you say???
Please elaborate. I was a high-flying associate professor
economist in an engineering school when getting TM in 2010. Then
I began to experience the unthinkable—literally. I could go into
class and do the entire lecture from my head. But after TM I
would get to a point in the delivery when it was time to pull out
some element from my head and, it wouldn't be there! It had
always been there, but now I couldn't recall it. It was shocking
and humiliating to say the least. It finally did me in.
Please tell me about these cognitive problems you mentioned.
DG
From: <[email protected]>
Date: Tuesday, 15 January 2013 9:53 PM
To: tmic <[email protected]>
Subject: [TMIC] need for a neuroloist
Resent-From: <[email protected]>
Resent-Date: Tue, 15 Jan 2013 18:53:27 -0800
I had the same neurologist for first five years of TM. I had
several MRI's and he was satisfied that I didn't have MS (TM left
me with cognitive problems). I had been on the same medications
for two years, my primary said he would renew my rx when needed,
and I didn't feel the need to contnue seeing my neuro (140 mile
round trip).
That worked for another two years until my primary moved and his
replacement refused to write my rx for the Lyrica and Baclofen.
She referred me to her neuro buddy, but I made an appointment with
another neuro whom I had heard was "the best" from one of his MS
patients.
The new Neuro agreed with my med regime, agreed that there was no
need for MRI's, and agreed that I didn't need to see him oftener
than annually unless I had neurological changes. The new neuro
also understood my frustraton with a primary who would not renew
my Lyrica and Baclofen rx.
I never went back to that primary and have since seen a Physicians
Assistant for my regular illnesses.
I didn't think I needed a neurologist. However, I realize that as
long as I need Baclofen and Lyrica and it is wise to have one
available.
Patti V. - Michigan
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