John,


I came across your site today & would like to share my story with others.

I am a 40 year old woman who has been a type 1 diabetic for 31 years. After a 15 month ordeal of doctor after doctor I have received a diagnosis of stiff person syndrome (SPS).

It all began with twitching in the left side of my face. I went to my primary care dr thinking I might have a vitamin deficiency but blood work came back normal. I've been through 3 neurologists who put me through countless meds to try and control the muscle spasms, EMG tests, 2 MRI's (brain and neck) because they thought it was MS originally. MRI's came back clean with no lesions so MS was ruled out. During this time the muscle twitching and severe muscle spasms with electrical/voltage feeling was getting increasingly worse. The muscle spasms were now happening randomly all over my body (calves, feet, thighs, hamstrings, back, arms, neck etc etc). Back was incredibly stiff some days to the point I could barely bend. The muscle spasms & associated pain are debilitating at times and very painful at others. The last specialist is a neuromuscular neurologist and after talking with her for 1.5 hours she said 'I believe u have SPS'. She took my blood and sent it for antibody testing which came back positive for antiGAD65. I initially thought i might have Isaacs Syndrome but that test came back negative. I have been on numerous muscle relaxers and the best combination so far has been Baclofen and Diazepam. I begin my IVIg treatments next week with hopes of some relief.
My thoughts and prayers go out to all of us suffering from this disease.
____________
Courtney