*painful spasms in the trunk or limbs or _______ add a spot.
*increased startle reflex.
*con-committent with other auto-immunitues, i.e. diabetes, hypothyroiditis aka Hashimoto's Thyroiditis, symptoms of bi-polar or borderline personality disorders, past seizure events, asthma, sudden allergies, other CNS disorders, more.
*painful spasms leading to a loss of motor control.
*unmedicated painful spasms leading to deformity (me!)
*tests positive for anti-GAD antibodies, low GABA-energic enzymes.
*hyperlordosis or some mal-adjustment of the trunk and/or stiff limbs = events that impede motor control.
*hyper-muscled trunk (I had truncal spasm)
*itchiness (pain) localized across my lower lumbar (just me?)
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Add your own.
no porn.pls.
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Rx for Dummies (i.e. doctors)
Types:
2 main types:
Those with elevated anti-GAD (Anti-glutamic acid decarboxylase (GAD), a GABA-ergic enzyme) antibodies. Glutamic Acid Decarboxylase converts into GABA, the happy enzyme!
Those without antibodies (don't respond to valium very well.)
Neo-plastic:
Ladies with breast cancer get SPS. Prolly from the treatments.
Corticosteroids are controversial, but may decrease the likelihood of mortality in severe cases that are complicated by neurologic changes.
They also don't respond to valium.
Acute:
Virus(?), presents with other auto-immune diseases. (I had sudden-onset. antibody positive.)
Gradual chronic (and getting worse):
Some anti-GAD poz get diabetes first. Maybe I just never noticed.
Treatment:
Diazepam. 40-80/day (heard of people up to 160 mg a day)
>>>>>>Like potentially lethal's mother, I take 20 mg TID of diazepam. (After you take it, you must exercise. It kicks in after .5 hour, so take a nice walk.)
Anti-GAD negative aren't helped by valium.
They use ibuprofen. They try baclofen.
Baclofen was in a movie i saw last night, fictionally controlling "lobe" seizures. I haven't tried baclofen yet. Note: The teaching hospital where I go has been pushing it since 2001. Update: I took it. It made me hallucinate (see swirling colored spots) and no pain control. Useless. (to me.)
neurontin = useless. Well.... I now take it again for the diabetic neurropathy. Not so useless. Doesn't control pain, but may control spasms.
2 outpatient Immune-Suppressing Therapies:
Plasmapheresis. It's kinda like cleaning your blood. Only tried it once. .
IVig. It's an infusion of other people's (anti-GAD-free) immunoglobulin. I have heard anecdotal reports that it helps. Some people swear by it. I confess that I got a bad bag. But I hear the bags are tested for more impurities now. (Maybe someone else with the bad batch sued Bayer! I dunno.) Expensive.
Exercise, exercise, exercise. Hospitalisation is not helpful to this end per: Lying in bed all day. I gotta go lie down. OK. I'm back. 15 mins. I take 3 walks a day. I live in a noisy city, so I get plenty of stimulation. Sitting around watching the boob tube is not stimulation. It is mind-control. Move close to a park. Short walks are fine.
Botulism Toxon A and B. It seems to work for a week. Maybe. Not a cure. No long-term benefits noted.
Note: these last two Rx are for improving and maintaining motor control. SMS can not be fixed. Only managed.
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2 comments:
My mother has this disorder.
She takes 6 diazepam a day in order to walk....
It is a terrible thing, to worry about falling all the time - everyday.
The IV therapy didn't work at all for her.
She's ok, though. Great attitude.
Take care.
My husband has SMS (also diabetes, disfunctional thyroid and vitiligo). We find your blog really helpful so I want to thank you for the time you spend on it. My husband also found no relief from baclofen (in fact he thinks it might have made his legs worse). The valium is a must have (half gram every morning). I know you don't advocate ivig and I would agree that the literature doesn't support it other than anecdotally, but here's an anecdote. We live in Turkey where there is universal health care and full coverage of ivig for certain conditions. His doctor would like him to get it every month, but he has been getting it every 3 months instead because it has gotten him from being unable to cross the room without holding onto the wall to being able to walk at a leisurely pace for hours over the past 2 years. Also, it is so expensive for the State that he is sensitive to being a burden on limited state resources (that's why I love him). I think SMS manifests differently in different people, so I would encourage you to encourage folks to try everything until they find something that works for them. Best wishes, Kiri
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