Wow

Wow after all this time of being diagnosed with Pd and then being told it was probably an atypical since I didn't respond good to the meds I finally found out I have something totally different. I have Stiff Persons Syndrome. And boy there is not a lot of info on it. But on a happy note, I've been on the meds for it 4 days and I haven't felt this good and pain free in over 4 years!

[ConnieD]

What medications do they recommend for stiff person syndrome? So glad you’re feeling better!😊

[Hidden in reply to ConnieD]

Starts with diazepam mainly, sometimes with baclofen. There is other stuff for down the road. It is progressive like PD.

[Xenos]

Thanks for the info. It a really rare disease, and I wonder...

Anyway, glad you found a relief !

I guess you are now taking benzodiazepins and myorelaxants (baclophen).

[Hidden in reply to Xenos]

Diazepam right now. The results have been incredible.

[parkie13]

Simply wonderful.

[Hidden]

michellendak,

I'm just curious if you know if magnesium chloride oil is useful for SPS? Seems like it would be?

Art

[Hidden in reply to Hidden]

I used it a long time ago when nothing was working and it didn't work then but thanks for thinking of it! I should definitely try it again now. Before my muscles were like rocks. Nothing helped.

[Hidden]

If a person is very depleted in magnesium, it can take longer to start working because the body will try to recover its reserves also.

Art

[Icequeen10]

I agree with"easily". I take a 400 mg capsule 2-3 times a day and find it keeps leg cramps under control and it is helping neuropathy in lower legs, ankles and feet.

[Hidden]

SPS appears to be an autoimmune problem and this may affect treatment options. ninds.nih.gov/Disorders/All...

[Hidden in reply to Hidden]

It fits there too because I have tons of autoimmune stuff in my family

[Mnikc]

Hi, i have had 2 positive GAD 65 titers in 5 years as part of a paraneoplastic screening for lymphocytosis w a pre CLL fish profile. My md at mayo 1st suggested it was from my sqig infusions, makes no sense since thousands of donors contribute for only 10 grams. It went up to 1.0second test. In last few years i can not cope w even minor stress without trembling, in last few months have developed intense leg spasms, tremors of legs and pelvis w incredible pain. I can not get mayo to respond w only minimal response”sometimes gad causes more pain”! Valium and pain meds make it tolerable. But my fear is that when out of meds ill be left in the horrible state i was in last week. In a ward for depression due to pain. Hospital said they know nothing about gad65. And did not contact mayo. I read that a gad titre above .03 indicates a neurological disease, often stiff persons. I also read of so many people in years of agony before diagnosis. Mayo has refused to let me see my neurologist due to 5,000.00 outstanding bill. To me thats a pittance to the hundreds of thousands spend on IG for my common variable immunodeficiency syndrome they received in last 10 years. My illness has put me in an existence of meds over food many months.

I just had to write this long convoluted message knowing so many others understand the suffering and frustration we go through, then to be turned away by Mayo after 11 years, perhaps it will turn out to be a blessing since i have found out that my treatment has been guided by medicare reimbursement rates not my symptoms.

If anyone takes time to read this God Bless You, writing this to readers who understand difficult times and hopefully wont judge me is therapeutic. We are the “lepers” of modern times. Maganalized, starved, isolated. I have to believe this will come to a conclusion, where someone dares to say that my GAD level indicates a neurological disorder, and i get a diagnosis and treatment.

Thank you to the community, KC