New Diagnosis

[Sunshine]

Neuro was suspicious of Stiff Person Syndrome because of the intensity of the muscle spasms. He ran some esoteric blood work 2 weeks ago, which came back yesterday with many abnormalities. The most notable one reveals a definitive diagnosis of stiff person syndrome. It is an autoimmune disorder that attacks the brain and spinal cord. Very rare: one person in a million.

Dr. said that my abnormal brain MRI in Feb was consistent with MS lesions. He said it is quite possible I have both MS and SPS, that does occur. The July brain MRI changes will tell him if it is both MS and SPS, or just SPS.

There is no cure. Treatment is symptomatic:

Treatment traditionally is IVIG, which I already do, Baclofen, diazepam , gabapentin, etc as needed. If necessary, plasmapharesis,... and insert a Baclofen pump in body to directly pump the Baclofen into spinal cord. Pulse steroids are also tried.

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Am trying to wrap my mind around this.

[Parsi]

Hugs. Wishing you peace of mind.

[agate]

I'm hoping your neuro is wrong but if he's right, I hope they can come up with treatments for the spasms that will work. Have you had the EMG along with the diazepam as is mentioned in the diagnosis section of the article you linked to?

I have a neighbor with stiff-person syndrome. She's been here for at least 8 years. Seems to be a bit like MS in that you learn to get along with it and find work-arounds for it.

I'm so sorry about this. I still hope he's wrong.

[stillstANNding]

Bbs, I am wrapping my head around it w you. I am hoping w agate that he is wrong.

Love & chocolate & peace,
ANN

[Sunshine]

The blood test and history are definitive. The only unknown is if it is also MS and he seems to think the next MRI can shed light on that,.. when I see him for follow up, I will ask if it could be Lab error, should we look again at blood work,

I am so glad he is observant and respectful. When I told him last month that it seemed like something more than MS, that it seemed like some metabolic or nutrient problem and or pernicious anemia, he decided to pursue it.

It's so very rare one in a million, that I guess Dr. Vollmer at Yale and Dr Sheremata at U Miami, both in 1999, did not test for it. Why would they, right? With only a few hundred people in USA with it.

[agate]

Sounds like another disease, like MS, where only an autopsy would settle the question about what the person's diagnosis really is.

Since that's the way it is, maybe the thing to do is to find out all you can about stiff-person syndrome and what can be done about it in case you have it, then concentrate on having the best life you can by doing what you can to stop the spasms and other problems.

Rituximab seems to be one of the treatments for it. If you could start taking Rituxan, would you be treating the MS and the SPS at the same time, I wonder?

[Sunshine]

Recent research showed Rituxan doesn't help SPS. IVIG, Valium, gabapentin, plasmapharesis, Baclofen are mainstays.

I think SPS is easier to dx due to a definitive blood test. Docs just don't routinely screen for it as an MS rule out.

Whether they dx concurrent MS or not, I will still be here. Our issues are very similar,

I suspect the MRI is ruling out brain tumor as well, in light of other wacky blood values this week.

[SuzE-Q]

So sorry, BBS. How uncanny that a tx for it is IVIG!

Do you have just one limb more affected than the other?

Sounds like you have a good doc that looked outside the "MS box"!

[Lazarus]

There is nothing brilliant to say. I hope it helps to know this news makes us all sad.
The whole group is hugging you.
Linda

[Howie]

It's not fair, we only allow one disease at a time, and here you go getting two. It sounds like you have a great doctor. He's really on top of the situation. I wish you the very best!

[Sunshine]

Yes. Plus I also have CVID, an immune disorder where body doesn't make antibodies correctly. IVIG treats that too. That illness is 1/50,000.
What the heck was my mom smoking during conception?!

I am a clean living person, normal weight, great nutrition, never smoked or drugs, don't drink alcohol, etc. maybe I need to take up smoking, get obese, drinking and wild orgies?

[Howie]

Don't forget me when the wild orgies begin.

[agate]

Did someone mention orgies?

Wild orgies with everybody wearing thongs or less and guzzling mysterious liquids that do miraculous things for you like cure whatever ails you.

Who needs a DMD?

[stillstANNding]

There is a point for orgies but who has that kind of energy??
ANN

[agate]

I think it's OK just to loll around at an orgy.