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Stiff-Person Syndrome
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*Fifi*
Posted 2006-01-03 3:25 PM (#40135)
Subject: Stiff-Person Syndrome


Has anyone ever heard of this? I had a 68-yr old man come in for treatment of SPS yesterday. I hadn't heard of it. I did some research, which I copied and pasted below. He has concentrated pain in the shoulder, which acupuncture seems to help (over the last 24 hrs). He is slowly "rigid-ing up". I recommended yoga, herbs and vitamin/mineral supplements for him. I suggested Bikam since it's hot and he cold-intolerant. He's also a retired Military officer and up until 5 years ago, a very physically active person. Bikram will make him feel like: 1. He's in boot camp 2. He's had an intense work out 3. He is detoxing his body from all the W. meds (namely diazepam, which is Valium).

I am looking for insight. Sorry for the lengthy post. Below is a W. description of SPS:

What is Stiff-Person Syndrome?
Stiff-person syndrome is a rare progressive neurological disorder characterized by constant painful contractions and spasms of voluntary muscles, particularly the muscles of the back and upper legs. Symptoms may occur gradually, spreading from the back and legs to involve the arms and neck. Symptoms may worsen when the affected individual is anxious or exposed to sudden motion or noise. Affected muscles may become twisted and contracted, resulting in bone fractures in the most severe cases. Individuals with stiff-person syndrome may have difficulty making sudden movements and may have a stiff-legged, unsteady gait. Sleep usually suppresses frequency of contractions. Stiffness may increase and patients may develop a hunched posture (kyphosis) or a swayback (lordosis). Researchers theorize that stiff-person syndrome may be an autoimmune disorder. Other autoimmune disorders such as diabetes, pernicious anemia (a chronic, progressive blood disorder), and thyroiditis (inflammation of the thyroid gland) may occur more frequently in patients with stiff-person syndrome.

Is there any treatment?


The drug diazepam, which relaxes the muscles, provides improvement in most cases. Baclofen, phenytoin, clonidine, or tizanidine may provide additional benefit. In some patients, immunomodulatory treatments such as intravenous immunoglobulin may be beneficial. Physical and rehabilitation therapy may also be needed.

What is the prognosis?


There is no cure for stiff-person syndrome. The long-term prognosis for individuals with stiff-person syndrome is uncertain. Management of the disorder with drug therapy may provide significant improvements and relief of symptoms.
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Posted 2006-01-03 4:51 PM (#40139 - in reply to #40135)
Subject: RE: Stiff-Person Syndrome


i think thai massage would also do wonders for this sort of condition.
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tourist
Posted 2006-01-03 7:37 PM (#40147 - in reply to #40135)
Subject: RE: Stiff-Person Syndrome



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Wow - sounds painful! But getting active again will probably be the best thing for him - all that activity in the past probably a) overtaxed his muscular system and b) kept him from tightening up sooner so it likely helped and hindered at the same time. I have zero qualifications but I would think he would do well with yoga, some tai chi and regular swimming, walking and cycling. He really is going to need to move through a full range of motion to keep his joints loose (tai chi) and use his whole body (yoga and swimming) and do some walking and cycling on his "off" days just to keep things moving. Probably cutting out meat and doing insane things like fasting would be beneficial as well
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kulkarnn
Posted 2006-01-03 7:53 PM (#40148 - in reply to #40135)
Subject: RE: Stiff-Person Syndrome


He needs to do:

a) Meditation and Relaxation.
b) Fasting
c) NO Herbs
d) NO Heat
e) Massage is better than other therapies. Acupuncture is better than any chemicals including Herbs.

Peace
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Cyndi
Posted 2006-01-03 8:45 PM (#40150 - in reply to #40135)
Subject: RE: Stiff-Person Syndrome



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Fifi,

I agree with you, Bikram might be good for him and I completely understand why you would select the Bikram style for a military guy like this. I would make sure he goes to a lower heat Bikram or perhaps a Hot Yoga Class. Chinese Herbs will help any side affects from his body detoxing from the meds, I wouldn't stop the herbs (they are Chinese right??)..but I would recommend that he not take any herbs, food or supplements at least 2.5 hours before and 1 hour after doing Bikram yoga....seriously.
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*Fifi*
Posted 2006-01-03 9:50 PM (#40152 - in reply to #40135)
Subject: RE: Stiff-Person Syndrome


Thanks for everyone's input.

Apparently there is a lack of dopamine in his brain, which causes his muscles to rigid-up (my new term for tighter than just tightening-up). There was one article I read about SPS that said in extreme cases, the msucles of SPS people can become so rigid they fall over like tin soldiers. This is the most bizzare thing I've heard of! I wonder if meditation "balances" neurotransmitters; not too much and not too little. I've read some of Daniel Coleman and the Dalai Lama's books on scientific studies of meditation, but I can't remember all the good stuff (and you know how most "mainstream" people love getting all "the facts" before making a life change, even for the better).

Stick Person Syndrome is classified as an neurological and autoimmune disorder. This patient also has an IV of IgG (immunity stuff) 4 x a year. He said it costs his insurance $20,000 per treatment. Yes, that's right, twenty thousand dollars per treatment! Well, just because a hospital bills $20,000 for a procedure, it doesn't mean the procedure actually costs that much. It's just what the hospital wants to get from the insurance companies.

I really hope he takes yoga regularly. I'll keep you all posted of his progress.
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Posted 2006-01-04 5:23 PM (#40211 - in reply to #40135)
Subject: RE: Stiff-Person Syndrome


also, does he get enough essential fatty acids and cholesterol. these play a huge role in all sorts of neurological, nervous system, and hormonal situations that may also cause these sorts of symptoms.

also, how do they test the dopamine levels, and have his been tested?
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Posted 2007-08-20 11:58 AM (#94525 - in reply to #40135)
Subject: RE: Stiff-Person Syndrome


Hello Fifi,

Neurological disorders beg that we not further place demand on the nerves. Therefore a heated, hot, power, or agressive practice would not be something I would recommend. No healing can occur in the human body unless the nervous system is "relaxed".

The first order of business with such a disorder (though I'm not sure I'd classify this as a "disorder" proper) is to focus on bringing more Yin to the life of the student. Calming foods in the diet, shifts away from junk, caffeine, refined sugars, wheat, and dairy could all be appropriate. Foods in the diet should be ones that create an alkaline state when consumed (rather than when sitting on the table).

Asana should be gentle, specific, and provide the opportunity for increasing movement. However said asana practice should not be the standard practice or sequences found in a drop-in class. This person needs to be nurtured.

Additionally when the person has developed a trust with the teacher it would be appropriate to broach the subject of dealing with any emotional issues that might be lingering.

I have not read anything on SPS but it sounds, initially, like more research needs to be done before any conclusions can be drawn from the medical comunity. Calling a nervous system issue Stiff Persons Syndrome sounds like a cop out.

Edited by purnayoga 2007-08-20 12:00 PM
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tourist
Posted 2007-08-20 2:49 PM (#94545 - in reply to #94525)
Subject: RE: Stiff-Person Syndrome



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maux - while I welcome your input on this puzzling syndrome, please use courtesy and respect when responding to posts. Purnayoga's advice to give up junk food and sugar is not exactly radical and is probably good advice to all. In fact, he is known for not giving specific advice without very detailed questioning of a poster.

Can you tell us more about this disorder? Is it related to fibromyalgia or ??? What is the prognosis beyond diabetes? Have you found you have built up a tolerance to valium and had to increase th dosage? I always felt it was an excellent drug that got a bad rep. from being over prescribed.
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Nick
Posted 2007-08-20 3:58 PM (#94557 - in reply to #94545)
Subject: RE: Stiff-Person Syndrome



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Location: London, England
Hi,
I had to look this one up it's called 'Moersch-Woltman Syndrome.' Sorry to hear of you having this condition. I would have thought yoga could be very beneficial, if done intelligently. When physical therapy is used on SPS patients, it is often done with regard to functional training, to try to replace the deficits imposed by the disorder, and stretching, to try to relieve the muscle spasticity. The mental apsects of yoga mat also be very helpful-one of the things that causes spasticity is what chiros call 'the inhibition of the inhibition ' of the peripheral nervous system-the brain serves to inhibit the tone of muscles-if the nerve supply is disrupted, then the muscles go into spasm-hence stroke patients bend the elbow and flex the wrist, and their gait is altered. It may be that the brainwaves and thought processes that are induced by yoga practice could have some impact-depends on its severity, I guess. One other thing, if balance is impaired, there's lots of sitting and lying postures so that danger of exercise is reduced.

Nick
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tourist
Posted 2007-08-20 6:20 PM (#94568 - in reply to #94557)
Subject: RE: Stiff-Person Syndrome



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Well maux - I thought purna was polite and you were rude, but I know purna and I don't know you and that can affect perception, so we will leave it at that. He is more than able to defend himself, though I hope it doesn't come to that.

I will say that in general, I tend to agree with his assertion that we are very busy naming things "disorder" and "disease" these days. I notice by the TV commercials and magazine ads that almost everything that they can sell a "cure" for has a name with initials. I can hardly wait for headaches to become "CID" or "cranial inflammation disease" OTOH, giving these unusual disorders a name can sometimes help folks like you get some attention and relief. I think there are a lot of orphan diseases out there that are not being treated well simply because, as you say with valium, they don't have an expensive drug they can make $$ with.

As for nutritional advice, I believe we are each an experiment of one. As I read back through the thread, I noticed that my own reference to fasting had beside it. It is not for me. And it seems like, at least for you, any extreme is not useful. Too cool or too hot, lights and noise, so I would imagine that an excess of any food or type of food might cause similar reactions. Fascinating!

You may have mentioned this in your 1st post, I don't remember - do you know others personally who have this? Do you share info in person or online? Or is each person just stumbling along as they go? I've got to say, there are days when I could use an good excuse for a shot of vodka in the morning
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Posted 2007-08-21 1:47 AM (#94590 - in reply to #40135)
Subject: RE: Stiff-Person Syndrome


For the record (rather than for debate) my response was to Fifi.
It was not to any other posters regardless of their perspective or proficiencies.

Fifi asked a question of the memerbership, of which I am contributor. Each person has the right, latitude, and opportunity to respond to her question. I think my response to her was well within boundaries based on her question.

This is a Yoga forum and as such, responses typically, fall within a yogic context. Other forums may lend themselves to other contexts. For me I assume posters here are seeking an alternative to meds, surgery, and gloomy prognosi. Though some times those things, for some people, in some cases, are completely appropriate.

What is inappropriate is to leak anger on others then point a finger. That is not of the path of yoga and therefore is questionable behavior on a yoga forum where the very nature of the board is a yoga context. If the yogic context is not desired it would seem the resolution would be to go to a forum where non-yogic contexts abound. Either that or have some tollerance for the opinions of others.

Zealot or martyr???

Edited by purnayoga 2007-08-21 1:54 AM
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Nick
Posted 2007-08-21 3:31 AM (#94596 - in reply to #40135)
Subject: RE: Stiff-Person Syndrome



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Location: London, England
Hi there,
Sometimes SPS is mis-diagnozed as multiple sclerosis. As such, wouldn't the heat of a bikram class be problematic? Just wondering.

Nick
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tourist
Posted 2007-08-21 10:32 AM (#94614 - in reply to #94568)
Subject: RE: Stiff-Person Syndrome



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maux - you are treading a very fine line here. Maybe you are past that line already, but being as diplomatic as possible, as I always try to be, I will give you another opportunity to join the forum in a civil way. We as a group have a tendency to be very supportive and interested in one another's challenges. We value the input of our members who may have expertise in one area or another either due to training or experience. Fifi is a long term member of the group whose input we value, as is purnayoga and many others. You would be welcome as our resident expert on your condition if you were willing to share rather than attack.

EVERY SINGLE statement or question in my post was meant to increase our understanding of your condition and educate our members and lurkers (except the joke, which of course was a JOKE!!! Apparently your disorder affects your sense of humour as well... ) No matter whether a syndrome has a foundation or not does not make it well studied by the medical community. It is my understanding that these are called "orphan" diseases. As for naming another "unknown" condition that isn't getting worldwide publicity, well, that is going to be a bit hard if it is unknown, isn't it? My comment about attention was referring to attention for the condition. It appears you are well able to get attention to yourself and don't need help with that. Yes, read sarcasm here...

Newbies barging into boards and being pushy and rude are the scourge of the internet. As far as I know, you have no rights of any kind. As a moderator for the board, I will ask for you to be banned if this nastiness continues. Your medical condition is no excuse.
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Cyndi
Posted 2007-08-21 5:41 PM (#94643 - in reply to #94614)
Subject: RE: Stiff-Person Syndrome



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Actually, this thread is almost 2 years old. I'm sure Fifi has already moved on with this one.

I still think Bikram/Hot Yoga would be good for this syndrome, if you want to label it as one. I say that cautiously, because one would need a really, really experienced Bikram/Hot yoga teacher for guidance with careful attention to alignment. I wouldnt' just go into any Bikram studio and start with this type of disorder. Really, these are all "symptoms", it is really not a syndrome.

We all know that there are sooo many success stories where Bikram is concerned with helping these kinds of symptoms. Sometimes there is no "magical" explanation as to why it works, but it does.
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bstqltmkr
Posted 2007-08-21 6:14 PM (#94649 - in reply to #40135)
Subject: RE: Stiff-Person Syndrome


Hi Cyndi, I haven't seen you on in a while. I just wanted to say that actually syndrome is really just a set of symptoms so that a disease can be diagnosed. Usually they use syndrome when they don't know why it happens or how to cure it.

Shelly
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Cyndi
Posted 2007-08-21 7:29 PM (#94663 - in reply to #94649)
Subject: RE: Stiff-Person Syndrome



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I know Shelly. My mind just doesn't work with syndromes, much less symptoms anymore. It's really interesting that once you get established in your yoga practice, all these things seem to be so irrelevant. The symptoms come and go....and they do pass, eventually. So the bottom line is...there is hope for the cure,
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SPSguy
Posted 2010-06-08 9:01 AM (#123393 - in reply to #40135)
Subject: RE: Stiff-Person Syndrome


Maux cross posted this... I'm an SPS'er and here's what the disesase is. Would be happy to know of any suggestions to this horrible condition...

Like and unlike MS, which is fairly common, Stiff Person Syndrome ('SPS') or Stiffman Syndrome, Moersch-Woltman Condition has occurance of about 1 in a million.

It is an autoimmune disease. In MS, the body attacks the sheaths around body nerve fibers (like insulation around wires). SPS is an aitoimmune that atacks the brain and leaves the muscles/nerves in the body intact.

In most common form of SPS, the autoimmune system (B Cells GAD65ab eiotope) attacks the brain cells responsible for GABA production and the signalling of agonist and anti-agonist nerve muscles, but signalling both at the same time... So the brain, often when 'startled' sends out signals to contract and relax constantly, or in spasms, all at the same time. Sometimes for hours. Muscles can tear off of bones; or bones can crack. Falling over stiff as a rock is also not fun, depending on what you hit. Because of trigers such as noise, touch, etc. SPS'ers often become reclusive.

Drugs such as valium (short term use) or gabapentin increase brain GABA. Other drugs such as blacovin, other diazapam family drugs are also used; antiepiletics.. Topamax, etc. etc.

Keeping the brain happy:

1. Sucking out the bad immune system stuff that's attacking your brain cells (most of us SPS'ers like to keep our brain cells) are IVIG or q IG; but you need to get IVIG infusions that are from donors that do not have GAD65 in it. since a bag of IVIG comes from 200+ donors, and 'normal' immunoglublin from diabetics has GAD65 (destroys pancreatic beta cells) you have to screen and avoid all the McDonalds pre-diabetic donors..


2. Apherisis sucks out all of your blood from your body, usually with a surgically inseerted central port (lasts a year or two until clogged or infected) and keeps all the red and white cells, while sucking all the plasma away and replacing it with clean generic fluid. This removes ALL of your mature immune stuff - T and B cells; the whole shmear.

3. Rituxin/Rhuxtibub is a monoclonal Anti-B cell chemo (made from a chimeral mouse/human cell with DNA inserted to produce B-Cell killers) It is used in RA and some luekemias. there are other, similar RA drugs coming on the market that may also be usefull. It is a qualified failure: 1 out of 3 SPS'ers get to stand up straight and walk. Since it only kills mature B cells, your GAD65ab levles fall almost to 0 and your EMG nerve conductivity tests show 'normal' for 6 months at a time...

The disease is uncurable, progressive and intermittent. Lordosis develops; SPS'ers can be folded almost at a 90 degree angle. Legs and arms become stiff and hands become clawlike. Spasms and pain are high.

Of course, that's the good news. Untreated, the GAD65 levels and some other yet unknown factors (30% of SPS'ers have no GAD) can cause 20% to develop diabetes, 20% thyroid complications, usually the benign nodes and thyroid diseases, then thyroid cancer; and 50% breast cancer.

Physical therapists use passive therapies; some moderate excercise if the SPS'er is not to far advanced.

So, any suggestions?
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tourist
Posted 2010-06-09 10:16 AM (#123427 - in reply to #123393)
Subject: RE: Stiff-Person Syndrome



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Hi SPSguy. Funny that you should bring this thread back to life as I now know someone who has this disorder. Unfortunately, I don't know the person well enough to inquire about their treatment plan. Unlike our poster whose comments were removed and I hope never to see online or in person again, this person has an extremely happy disposition and positive outlook on life in spite of having a horrifying disease in the prime of life. I hope you find some answers and share them with us.
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Cyndi
Posted 2010-06-10 10:45 AM (#123443 - in reply to #123427)
Subject: RE: Stiff-Person Syndrome



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MASSAGE!!!!!
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georgeshoemoney
Posted 2010-08-06 2:03 AM (#124541 - in reply to #40135)
Subject: RE: Stiff-Person Syndrome


The effectiveness of intravenous immunoglobulin (IVIg) treatment in reducing stiffness and lowering sensitivity to noise, touch, and stress in people with SPS.
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