Thank You. You have helped me describe the feeling I have around my waist and
pelvis "I also have the feeling of a tight, over-washed
crepe bandage bound round my ankle" yep I know what you mean ! but I was
struggling to describe it. It seems that with the Dr's you should not try to
work
out which questions to ask more, ask them every question you can think of !.
I can't help much here being new to this myself. It is always difficult to
question Dr.'s and get just what you want from the consultation.
Let me know how you get on,
Regards
Giles Moriarty.
<gilesandjo(AT)msn.com>
----------
From: Billington, Rosie
Sent: 24 March 1997 10:06
To: TM
Subject: New subscriber
Hello.....I am a new subscriber too. I have been looking in on the list
for some time now but am only just able to write about my experiences. I
was interested in Robert E Parker's comment in response to Nancy :-
> the one thing you will find is that most
>peoples tm started the same way. in my case within four hours i was
>paralysed from the chest down.
I had a differnet experience ...... in late November, I had a tingling and
itching feeling in my legs, 2 days later they felt really cold....although
not cold to touch and I began to find walking difficult. 2 weeks after
that, the loss of sensation was moving up my legs to about mid-thigh level
and I had a feeling that I had a broomstick up the bottom and increased
frequency in urinating. I was admitted to hospital and an MRI scan
indicated damage at about "bra strap" level. Following a lumbar puncture
(CSF), chest X-rays, ultrasound on bladder, numerous blood tests and a
visual accuity test, I was given 1 gram of prednisol (?) (steroid) IV for
each of 3 days and sent home. The intial diagnosis was Infectious
myelitis, ? Transverse Myelitis. My doctor (a professor) suggested that
it was most likely to be TM and that in 50% of cases this turned into MS,
either by having a second occurence or by developing problems in another
area. In my case the 50% incidence was likely to be raised because I
have a father with MS. (Incidentally, he also knew of a distant relative
with MS).
So to now, I am still awiating the results from the CSF analysis and
hopeful for a formal diagnosis. I gradually gained normal functions on
the bowel by late January although I still have increased frequency , but I
still have numbness and pain from my knees downward. The pain seems to
increase when I'm tired, premenstrual or starting a cold. The pain is
actually of several types - I have what seems to be hard stones on the
bottom of my feet, accompanied by a feeling that I have walked miles in
uncomfortable shoes. I also have the feeling of a tight, over-washed
crepe bandage bound round my ankle and instep, my big toes and sometimes
just below my knee. I know this is nowhere near as bad as for some of you
but it feels horrible to me. I have a young family and a full-time job ,
both of which I am struggling to manage. Four months on, I feel as if I
have done bravery ....... I am going to the gym and swimming about once or
twice a week but it makes me very tired. My job is likely to be changed
considerably as I can't travel anymore and frankly, I'm finding things
tough.
Any suggestions ? What should I be asking the doctors ? Am I doing
the right thing exercising ? Is this ever likely to improve 100% ? What
drugs should I be asking for to stop the pain or should I just grin and bear
it ?
Thanks for listening
Rosie Billington