a new person

jo.macey(AT)sims.co.uk
Mon, 21 Dec 1998 22:46:33 -0000

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.