New condition???
 

I was just wondering, anyone heard of Stiff Person Syndrome? I was admitted to hospital yesterday for some tests, and the dr think it's more likely to be SPS rather than PLS. There's no difference in both, except that my insurance pays for the latter, not the former. Both have no cure, but my symptoms don't really sound like SPS, since the spasms are supposed to be painful. Mine's painless, and it just vibrates in a clonus-like spasm. I may be posting this in the wrong place, but juz wanted to see if anyone can help since lots of u are better than the neuros I've seen so far.

The dr seems to want to start me on ivig treatments which supposedly r better for SPS. However it's expensive and I'm not so sure that I really have SPS. Since there seems to b no definite test for both, I don't know what to do at this point. There's supposedly no cure for both too. The last time I asked my dr before he admitted me, he said PLS shouldn't happen to ppl my age, but from what I read, SPS supposedly happens to ppl in their 40s too! I don't seem to fit that age range! :(

Forgot to add, my tests for the GAD antibodies for SPS are negative the last time round.

Currently my symptoms are just very stiff legs, stiff hands, occassionally my elbows lock up when I'm carrying or holding on to things. I have hyper reflexes, clonus, positive babinski and plantar responses, mild tongue deviation to the right. My left foot turns inwards, and it always goes into spasm when my dr tries to test that leg's reflexes. It's been progressing for past two years.

Connie, I don't even know what to say. After all this time, you have no definitive proof of what is wrong with you. I think it might drive me mad.

Have you looked over this site?

http://neuromuscular.wustl.edu/motor.html

Well, a trial of IVIG or plasmapheresis might help rule in or out some conditions.

Have you ever tried going gluten free? Have they tested you for celiac disease? B12 deficiency?

http://www.nlm.nih.gov/medlineplus/e...cle/003294.htm

What if it is a combination of factors? What if it's not one, all-encompassing disease?

I can't remember, what were findings in your brain MRI? Or wasn't one done? Did they ever do a spinal tap?

I think I'm too stressed out to even think tonight. If it is stiffman's syndrome, then they have experimented with a variety of treatments here in the U.S.

I hope you have a great weekend, without too many physical problems. I'm actually looking forward to the snow we are expected to have.

:hug:
Annie

Connie,I recently saw on TV in "Mistery diagnosis" about young woman,who had similar simptoms,Drs did not know what's wrong.Finaly,she found Dr Pascuzzi (neurologist) of IU (Indiana University),who was able to identify this disease.The woman said she was very happy with treatment.So,I think this Dr is experienced to diagnose (or rule out) this disease.Hope,this helps.
Marina

Connie, As I struggle to deal with all the fear I have I needed to say I hope you can do the IVIG. I cant see any down side unless you cant afford the it. I agree with what AnnieB3 said about it even helping rule in or out things. AS painful as this place is you are in you are fortunate to have a doc that wants to do this expensive treatment.

I thougth this week I was only a few steps away from getting good expensive treatments like that. Yet I get another biased, rotten doc who's words could make me lose the one cheap med that does keep me out of the hosp mestinon. Oh and a passing reference to disease modifying meds but they didnt mean the expensive ones they only meant steroids. I only have medicare and medicaid and have become clear my treatment options are being shaped by that with many of the docs.

I am sad for anyone who has to endure such limbo. Do you have family, firends that can help you during this time? Do you have services in you home to help? I have learned alot about these services so if you have questions send me a one on one message. I am more sure to see it sooner that way. My brain and eyes are worse than ever which makes it hard to even remember where I have posted.

Sending a hug:hug:

Annie59

Thanks for all your concern! Sorry I havent been posting, theres no wireless internet access available in the hospital. =/ After seeing all the doctors, they now think I may have dystonia, and are trying me on the med madopar to see if it works. Don't like this medicine at all due to the side effects. Makes me nauseous, loss of appetite and vomitted when they wanted to increase the dose to 187.5mg. Its supposedly a drug used to treat Parkinson's disease. I've been on it for about one week, and have yet to see any drastic results, except that I do feel that the spasticity seems to have decreased slightly. They've said that they would put me on the drug for 2 months to see if it works. I'm supposed to be able to walk normally without needing my cane if it is dystonia. If I'm not wrong, they think that I have the dopamine responsive dystonia, DRP.

I'm having emg tomorrow and am not quite sure what will that show too. All I know is that if they cant see anything on the emg, I'll be asked to try that med for 2 mths. If after two mths my symptoms still persist and worsen, then my search begins again, for a new condition.

AnnieB3: My brain MRI is fine, no big problems there. My vitamins all seem in place, they've taken a lot of my blood and said the tests were all normal. From what they've gathered from my medical history and how things started, they came up with 3 diagnosis: dystonia, stiffman's, and PLS. Think they're elminating the diseases in this order. I went to the first site you said, I don't quite understand all the medical terms. For the 2nd site, it seems that some doctors cant get a positive babinski, but some doctors said i have bilateral positive babinski. I think it depends on the way the doctors did it. Lol.

Marina: Thanks, though the more I read about Stiffman's, the more I don't think it is Stiffman's. Lol.

Annie59: it seems that I dont need to do the IvIG now, since I'm put on Madopar. Just feel like theres so much medicine in me! Sorry to hear about your journey, hope things work out good for you, and doctor is nicer to you. I only found a good doctor after 2.5 years of searching, and turns out he's the first neurologist in Singapore, also known as the father of neurology. Thereafter, my symptoms were taken more seriously.

Never heard of it, until the doctor told me my latest blood test was for that, and I got my results this past Friday. Negative.


You are not alone in this whirlwind of what in the world is wrong with me.