Re: a new person
Jo Ellen Finkelstein (ghellen(AT)ninenet.com)
Mon, 21 Dec 1998 21:09:13 -0600
jo.macey(AT)sims.co.uk wrote:
>
> Forgive me if this comes out all garbled - this is my first time speaking to
> you all.
> My story: -
> I lost all sensation from T4 down to my toes. It was 3.00am and I woke with
> a knife in my back sensation (or at least how I'd think a knife in the back
> would feel) I went downstairs to find some painkillers, but couldn't find
> any so 5 minutes later I was walking back upstairs when I realised I was
> walking as though I hadn't woken up properly and my legs felt really heavy.
> I got back into bed and within 5 minutes I went numb from my toes up to my
> chest - so within 10 minutes I'd gone from feeling absolutely fine to
> paralysis I didn't trust the feelings I was having and thought that I had
> trapped a nerve or was lying funny on my legs.so for the next two hours I
> lay still trying not to worry or wake my husband. By 5.30am I decided to
> get up and see if I really couldn't feel my legs and it was true I just fell
> against the bedroom wall - so I guessed it was time to let my husband know
> and he then called my doctors. When she arrived she was baffled as to what
> it was she left me some painkillers and said that if I hadn't regained
> feeling by the afternoon I should go to my own Doctors. No surprise to you
> all the sensation didn't come back it got worse so ventured to the Doctors,
> he too was unsure he had the cheek to ask if I was having any marital
> problems of course I wasn't at all happy with this as being told this is in
> my mind was NOT what I wanted to hear. So, he eventually said "I don't
> understand, you'll have to go to hospital". To cut a very long story short
> I was taken to Addenbrookes Hospital in Cambridge (by the way I'm from the
> U.K.) where I was given Steroids and a fun spinal tap.....
> I was discharged only to be readmitted 2 days later as the spinal tap
> wouldn't stop leaking it was here that my Neuro told me I had MS but if I
> wanted any information I should speak to the nurses and he'd see my 6 weeks
> later when he had all the results through. Again, I was sent home with no
> painkillers or any medication that was the beginning of September.
> In October I went for my consultation with my Neuro and infact he was wrong
> I don't have MS I have TM - huh what's TM???? Well he didn't shed much light
> on this subject infact I'd go so far as to say they don't really know what
> caused it, how long it'll stay or infact if I'll get it again - so I came
> home and found this page on the internet and have been reading it ever
> since.
> I went to my Neuro again today as I am having very bad back pains and begged
> for answers and he still didn't really have any he did say that I could be
> given some kind of anti depressant to help with the pain as normal
> analgesics won't help but I still left his office with no pain relief. So
> here I am 3 months later and I have had some improvements but get very
> frustrated with improvements and then 10 minutes later I could lose all
> sensation again.
> Is this normal? There seems to be no support or indeed much understanding
> of TM in England. Our Social Services don't offer much help with people who
> have "temporary" paralysis so I'm even having problems getting a wheelchair
> I have trouble walking for more than 20 minutes and sitting is a REAL pain
> and this isn't improving.
> Anyway I've rambled on long enough it would be great to hear from you
> particularly anyone who know of any support/people in England.
> >From a Frustrated Friend
> Joanne Macey
>
> Jmacey(AT)sims.co.uk <mailto:Jmacey(AT)sims.co.uk> <mailto:Jmacey(AT)sims.co.uk
> <mailto:Jmacey(AT)sims.co.uk> >
> All of the above is of my own opinion and not that of Capita Education
> Services Ltd.Hi Joan, Joellen here. I so sorry you have to go through all of this.
The only real thing they could have done for you was a round of
steroids, after that the only thing they can do is physical therapy and
treat the symtoms (pain, burning sensations etc) Don't give up, I have
found that arming yourself with information is your best defense, if you
can confroint them with information and tell them where they can find
info sometimes they seem to gain a respect for you. Unfortunately the
British medical system doesn't seem to do alot for us? I am in the US
and am fortunate to have excellent medical insurance.
Joellen