SPS.....stiff person syndrome

Hi, did anyone watch Extraordinary People on channel 5 last night?

It was very interesting. A 50 yr old woman, who had previously been a very fit and active Social Worker, after a car accident ended up having a most unusual health condition.

It was all very MS like or even ISP like, which I have been diagnosed with.

She was plagued with the most severe spasms, which made her whole body go rigid. Mixed in with this, she would get chest pain. She`s had umpteen tests for 14 years, with no diagnosis…yeh, very like me and a lot of you, eh?

Then a neuro tested her for SPS. There are only 1 in a million diagnosed with it and there is treatment available, which gives people back their life.

They looked for certain anti bodies, which cause the brain to send mixed messages to the muscles and this turns them excrutiatingly stiff.

It turned out that the lady didnt have SPS and she is still un-diagnosed, but having the awful problems.

She was waiting for a referral to a neuropsychologist…there was a sort of mention that it was all in her head! I am puzzled by that.

Baclofen/tizanidine were never mentioned.

I wondered why…?

What did you make of the prog, if you watched it?

luv Pollx

Hi Poll,

I watched the programme too and felt very sorry for the poor lady. I got the impression that they were suddenly doing all these tests because she had previously been in the newspaper. I felt that the whole purpose was to prove that she didn’t have SPS but not move her closer to a diagnosis.

I was very puzzled by the fact that in 14 years she had never had a lumbar puncture and like you why she didn’t have those medications. I may be wrong but when they said at the end that she had been referred to a neuro-psychologist it made me feel that they thought that it was all in her head!!

I was very disapointed by the fact after everything she was no better off except she knew she didn’t have SPS. I know that this happens a lot in neuro but makes me so mad.

Take care

Helen x

Yeh, the outcome left me very frustrated too!

She was very happy that she didnt have SPS, yet if she had, she could have got the correct treatment to ease her situation. She`s still got a big, fat ? on her bonce, like me!

luv Pollx

Yeh it sounds odd doesn’t it but the better outcome would have been to have it. The treatment seemed to give amazing results, that guy in America looked fantastic considering how he had been previously.

People still don’t get it do they that not knowing can be so much worse. I wonder how many people watching that would have thought that she had a good outcome or that she is probably making it up??? Honestly, a few years ago I might have thought the same. Being ill can change you in so many ways.

Helen x