Re: New subscriber
robert e parker (bob(AT)dragon7.demon.co.uk)
Mon, 24 Mar 1997 18:35:36 +0000
In message <3336718D(AT)fltgate.agw.bt.co.uk>, "Billington, Rosie"
<BILLINGTOR(AT)entcf1.agw.bt.co.uk> writes
>
>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
>
>
>
>
Hello...Rosie, Robert here i am glad you read my post, its nice to hear
from someone else in the UK. As i said to nancy in my post in most
cases of atm start quickly with out warning but not all. the madding
thing about transverse myelitis is it hits everybody differently, and is
so hard to diagnose, i am glad you can know write about your atm as i
think that being able to talk to other people about your problem really
helps, especially to people who know what it feels like to be numb
+hot+cold+ no movement in limbs+ strange pains that most painkillers
cannot help. you said "am i doing the right thing exercising" who can
say. i exercise four hours daily go to physio three times a week and
feel ok most of the time, but if i miss a day then i really suffer. i
have stopped taking most of the drugs i am proscribed and only take one
painkiller when it gets really bad, i also take prozac every other day
as i think stress really affects how we might recover. i also take lots
of vitims to supplement what we take in our diet does it help,
? ? i think it does. anyway i think we have to let our bodys help to
recover, and as theres no treatment for atm yet been found. i shadow a
lot of the ms groups and have picked up a lot of tips from there, as
there are many more people with MS i think that is wear a treatment will
be found.
anyway best wishes and good luck.
regards robert.:-)
--
robert e parker