For several years I had bouts of strange symptoms. Usually would not last long. Mild tremors, just a little off balance, spells of extreme sleepiness, long list. Usually with rest they would clear up.
Went to a doctor when it first began in early 90's and diagnosed with anexity disorder.
Over the years the spells got closer together and more severe, started falling, spasms in back, eventually thighs, feet, upper arms, and neck. tremors worsened.
3 years ago, I just fell over, no reason. so went to my dr who referred me to neurologist.
1st diagnosis--MS, mri showed no leisons
2nd diagnosis--Parkinsons, spent a year going through different types of meds, none worked for more then a few weeks.
Sent to a Movement Disorder specialist
He performed every envasive and painful procedures he could think of. I kept telling him I felt like it all had to do with my muscles, but he just laughed since most are either too rare, or develope in early childhood.
I became so frustrated I returned to my primary and told her all that had been going on--for some reason I thought that with all the neurologist I didn't need to go to her again for these problems.
boy, am I glad I did. She made me an appt with a neurologist who reconized my symptoms right away and order both lyme test and GAD.
Lyme was neg, but my GAD results plus his clinical evaluations diagnosised me with stiff person syndrome.
He had seen one other case before, and that was what made him suspcious.
Now on the right medications, I am doing much better. still some good days, but bad days are less often and less severe. though i do know this is progressive and so am just enjoying the good days to the fullest right now.
My new Neurologist told me persons with stiff person syndrome are usually misdiagnosed for years with:
before anyone actually runs the right test.
It is considered so rare that most dr.s never order the GAD test.
There is some question also, as to is it really as rare as thought or just that so many live mis-diagnosed?
I am now trying to find others for an online support group.
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