STIFF PERSON SYNDROME( a rare disease where your muscles go stiff, with ongoing spasms in any and all muscles) GAD65

[carin02011966]

I was diagnosed with SPS in 2013, although at that stage my neurologist was of the opinion that I had the syndrome for at least 5 years before being diagnosed. I am on high dosages of mood depressants, morphine etc . Not many has this disease, and I have been trying to get into a clinical trial for stem cell transplant for months. Not possible without high costs. I am from south Africa. It is not done here.

[mauschen]

I have never heard of this syndrome. Were you diagnosed in the UK?

I suffered with similar symptoms to what you describe but was surprised at the difference CPAP made to my muscle condition. Things are not perfect but my pain is at least 50% reduced. Muscle stiffness and spasms are only signs and symptoms of an underlying cause, not the actual illness. I would agree that we need more reseach in this area but wonder whether or not you would be a good research candidate given the medication that you take?

Hope you feel better soon.

[carin02011966]

Hi there. it is the presence of GAD65 that makes an accurate diagnoses.

[mrsmummy]

Hi Carin. As this is a neurological disorder you have joined the wrong forum. We deal with lung health here. I suggest you try FND Hope healthunlocked.com/fndhope , FNDOurStory healthunlocked.com/fndourstory

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Try this one too

google.co.uk/url?sa=t&rct=j...