You're not alone here in the UK. (Albeit I'm in Wales - Cardiff -
although not Welsh !!) Whereabouts are you ?
I got TM in late November 1996....mine started very slowly....pins and
needles and then numbness escalating from my feet right up to about hip area
over about 2-3 weeks. I spent a period in hospital mid-December having
the gamut of tests....MRI, lumbar puncture, x-rays, bladder ultra-sound and
so many blood tests, I didn't know which vampire would attack which arm
next. Well I was sent home after a course of steroids (3 grams over 3
days IV).......hobbling, high as a kite (the steroids) and not knowing what
would happen next. In the New Year, I gradually started to improve.....I
still walk with a hobble, although I drive, I have numbness and get bad
tight feelings around my ankles and my big toes, which the docs are treating
with Carbamazapine (This has really improved things). My lesion is L1-L3.
I had no immediate flu but I did have a REALLY bad cold in September which
dragged on and on and ended up a chest infection in late October.
I had my next outpatients appointment in April (a hell of a wait !) and
they seemed to think I would be totally free of symptoms in October (my next
outpatients). One downer though was that my Prof (its a teaching hospital)
indicated that 50% of cases could go onto MS and that percentage was raised
in my case as my Dad has MS. Glad to hear the old NHS is allowing you
another MRI. I would dearly love one if only to rule out that I'm not
taking after my Dad !
Well I'm still improving and taking myself down to the gym
regularly......the first time in my 41 years !!!! What did you mean by
"joint placement sensation" ? I have been getting a really shap pain in
both ankles and knees and have been wondering if I'm somehow twisting things
without my knowing it.
What I have found really good is the jacuzzi after the workout....there's a
really fast jet which I direct onto my numb areas on my feet which seems to
deaden all the pain. I reckon that the jacuzzi stimulates the area so much
that the false pain signals subside.....ie you give your nerves so much
stimulation, they want a bit of piece and quiet afterwards. Somone one
the list suggested very recently that a long towel looped under the foot and
then rubbed accross the instep worked for her. I would think this would
have a very similar effect to my jacuzzi ! I have also heard that
acupuncture is good - which of course is also stimulation.........although
I've not yet sorted that out - I work full-time and have 2 boys - 9 and 7,
all of which keep me pretty busy !
Did your doctors find anything in the lumbar puncture ? I wrote into the
lists about oligoclonal bands, which were found in my analysis and had a
mixed response....some have them, others not. I'm wondering if this might
be the differentiator between pure TM and 'TM as a description of a symptom
pattern' which then becomes MS.
Do keep optimistic......in my experience, you will have bad days and good.
I have found that the bad days usually prelude an improvement and I am
getting better although its damn slow !!!!!
I think there are some other UK members on the list. But not that
many.....not that there's that many of us to start with !!!!
Be positive
Rosie Billington
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From: Debbie Harris
To: 'tmic-list(AT)eskimo.com'
Subject: UK list member
Date: 16 June 1997 22:12
Hello
I have been reading this list for about 6 weeks now and have been both
pleased and sorry that there are other people out there with TM. I live in
England and have been unable to find out much about TM so was feeling like
I am the only one. I am 33 years old, an air-stewardess, generally fit and
healthy. Without going into too much boring detail I`d like to tell my
story and see if it is like anyone elses. In December 96 I had a shingle
like pain around my waist which lasted overall for about 2 weeks - no rash,
4 days later I woke up with flu and a slightly dead left leg. Over a couple
of weeks the flu went but the leg got steadily worse and the right leg
became affected too. My neurologist suspected TM and got me an MRI . When
the inflammation was seen I was admitted into hospital and on steroids
immediately. I had a lumbar puncture, EP tests etc and was discharged 1
week later with a zimmer frame and a follow up appointment for 2 months
later.
I got steadily worse over the next few weeks until I spent a lot of time in
awheelchair and went back to hosptal where I had a myelogram and an
angiogram - these tests were normal. A neurosurgeon wanted to operate (just
for a look) but after a second opinion we (luckily) declined. I was given
another course of steroids and have improved quite a lot since then. I can
relate to a lot of the symptoms I read about on the list . I have had the
tightness feeling in my legs as though my skin would burst - I no longer
get that. I do get the buzzing type sensation in my feet at times.
I can no longer drive which is very frustrating to me but compared to so
many others it is a small price to pay. The feeling in my feet and mainly
right leg is quite numb so even though I can now walk I have to use
crutches as I don`t have much balance. The patch of inflammation is at T12
- bladder and bowel are ok but not `normal`.The numbness seems to vary
from my waist to feet and my joint placement sensation is affected in right
foot and knee. I have physio and hydrotherapy 2 or 3 times a week although
I am about to be given a programme to do myself at the local gym. My next
MRI is in July so I may update then. I am ready to try alternative
therapies and would be interested to know if anyone out there has found
reflexology useful or if I am likely to get more improvement. I have now
had this for 6 months and the optimism becomes harder to keep going! I
would be interested to know if there are any other UK members or to hear
from anyone with similar symptoms and improv!
ement
Sorry to write so much!
Debbie
S.England