Originally Posted by Neurochic

Debbie

The best thing you can do is go with the proposed treatment. There isn't a cure for Stiff Person Syndrome or the variant Stiff Limb Syndrome and there is no clarity about the cause. It looks as though they may have multiple causes. The treatment they have suggested has shown some good results for long term symptom control/management. So have long term, large doses of muscle relaxants ,IVIG which you have had and some of the usual drugs like gabapentin and anti anxiety drugs. Specialist physio can make a massive difference to some people. To some extent it depends which stage of the disease you are in. Ultimately everything they do is about slowing progression to try and minimise the severity of the symptoms as long as possible. For many people the drugs give them good long term symptom control and halt any progression for a long time.



My neurologist believed I had SPS but then changed his mind. Oddly enough, I have an acquaintance who was diagnosed with it at the same time as I was told they didn't think I had it. It's a crappy diagnosis to get but if its what you have then at least you know and can start to move forward.

Good luck with the treatment.