I'm serious. I know there is such a disease and my late father had it. Unfortunately, I did not know him. He left when I was about 2 y/o. From what I know this is similar to PD but there is a blood test for it that the Yale Med. Ctr says is 99% accurate at detecting it. Thanks.

Yes, I think it's an autoimmune disorder. It's rare, so it's great that there's a blood test for it.

Jim : what are your symptoms? Thanks, little rock

I have a lot of PD symtoms and they appear to me to be levodopa responsive. But a movment disorders spec. from U of Miami recently saw me and noticed that I mostly have trouble with my legs and trunk, primarily my thighs and I cannot straighten upright. I have now found that I get some relief from clonazapam very quickly and for some time on just .5 mg. My DBS is not as effective. I dont really get muscular tone relief from it I get relief of dyskinesia when I try to take lots of sinemet to get "on". MY father had been diagnosed with stiff man's and he could only get relief from valium. He died rigid in bed and unable to swallow. It affects your axial or center (trunk) muscles. skeletal and then later the respriatory and swallowing. It is estimated at 1 in 1,000,000 but there are no know genetic connections. I wonder with that few occurrances how can you study it. Any help thanks.

From http://www.orthomolecular.org/
"Orthomolecular medicine describes the practice of preventing and treating disease by providing the body with optimal amounts of substances which are natural to the body. "

We are told that we get plenty of nutrients in our food and everything is wasted so get it out of our silly little heads. And don't ask questions.

An MD trained in omm may be a little hard to find but it might be worth looking. One vitamin can ruin your whole life if you:
1) Don't get enough of it in diet;
2) Lack the proper gastric environment to process it;
3) Lack the proper transporters to move it around;
4) Lack the proper enzymes to do what mst be done;
5) Lack the proper co-factors needed to do its job;
6) etc etc

Any one of these and a dozen more can do you in and medicine will never know. An omm tries to find the problem earlier in the process. Radical concept.

When I went to see a Rheumatologist he mentioned PD and Stiff Person Syndrome to me. He said that the cogwheel rigidity that I was experiencing is most commonly associated with PD though. The one thing about Stiffperson Syndrome that keeps popping into my head is that it is typically associated with people that have autoimmune type 1 diabetes...which I developed at the age of 27. Basically, my body made antibodies that attacked the beta(insulin producing) cells in my body. The way that they determined that I had type 1was by running a GAD antibody test. Apparently that is the same test that they run to determine if you have Stiff Person Syndrome, but from what I understand, the GAD test results will be off the charts if you do in fact have SPS. At the time my type 1 diabetes was diagnosed my GAD results were just above 5.0, which is just above normal. I think I will ask my doctor to run that GAD test again and see what the numbers are now. I am pretty sure that I have PD. My tremor is very subtle and usually occurs with intentional movement, but the tremors definitely become more pronounced when I become upset about something and become very pronounced even in a resting state. I am going to see a MDS in November, so I hope to get some clearer answers from him.

the YALE Medical Journal on THE SUBJECT:
http://www.med.yale.edu/neurol/progr...stiff_man.html

Stiff-Man Syndrome

Introduction

Stiff-man Syndrome is a rare disease of severe progressive muscle stiffness of the spine and lower extremities with superimposed muscle spasms triggered by external stimuli or emotional stress. Typically symptoms begin between the age of 30 and 50 and respond to benzodiazepines. EMG shows a characteristic abnormality and anti-GAD (glutamic acid decarboxylase) antibodies, which are very specific, are present in 60% of people with the disease.

Key words: Stiff Person Syndrome, Moersch and Woltman Syndrome, Anti-GAD antibody, Stiff man syndrome

History

Stiff-man syndrome (SMS) was first described by Moersch and Woltman (1956) in a case report of 14 patients seen over 27 years. A literature review by Gordon (1966) including one patient of his own and 33 from the literature more sharply delineated the characteristics of the disease and postulated that the symptoms might be due to a failure of inhibitory function. A follow-up report of the Mayo clinic experience by Lorish (1989) describing 13 patients seen over 30 years established standard criteria for diagnosing the disease. A cumulative literature review by Jankovic (1991) included 2 patients of his own and 82 others is the most recent large scale report of the disease. Effective treatment with a benzodiazepine was described by Howard in 1963.

Clinical Presentation

Epidemiology
SMS is very rare. The prevalence has not been reported however it may be as rare as 1 per 1,000,000 persons. There is no clear racial or ethnic predisposition although the disease may be more common in women than in men. Patients with SMS often have other autoimmune disease. A related disorder has been found in association with lung or breast cancer and is distinguished by the production of anti-amphiphysin antibodies.

Clinical features
Although most often the disease begins insidiously and progresses over years, in some cases symptoms can develop over weeks. The first symptom is usually a persistent progressive stiffening of the back or a limb which may be worse under pressure e.g. crossing a busy street. A sensation of aching or stiffness may be noted. This progresses with time and is described as stiffness, rigidity, hypertonia or increased tone. Additionally patients experience spasms of the involved muscles which are characterized as severe, tremendous, intense and painful. The examiner may feel there is a volitional component. When stiffness and spasms are present together patients have difficulty ambulating and are prone to unprotected falls i.e. falls like a tin soldier. When in spasm the muscles are hard to palpation and may produce abnormal joint position: extension or contraction. Spasms may be triggered by sudden noise, touch, electrical shock, passive or volitional movement and are typically relieved by sleep. The onset of stiffness may less commonly begin in the face and arms however the spine and legs almost invariably become involved with time. An increase in the normal curvature of the lumbar spine or hyperlordosis is common. In the GAD antibody positive form of Stiff-man syndrome there is a strong association with other autoimmune diseases such as diabetes, hyperthyroidism, hypothyroidism, pernicious anemia and vitiligo. Often before the diagnosis is established people are considered for psychiatric evaluation because symptoms wax and wane over time and are apparently worsened by heightened emotional states. Patients with SMS have been described at fearful, afraid and depressed; it is important to consider the impact of the symptoms of SMS on the patientís overall well-being.


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Another well documented link
http://www.emedicine.com/neuro/topic353.htm#target1

I was diagnosed 12/11 for stiff person syndrome, MS and Lupus after anti GAD, lumbar puncture, etc etc.Symptoms for years but never taken seriously by family practice dr. until my body literally went into acute distress. How do I know which disease is causing what? On copaxone, monthly Carimune IVIG from which I have adverse side effects. My medical bills are outrageous and just applied for SSI. I travel 9 hours to seek treatment from a neurologist. Emergency room visits have been humiliating and horrific. last week I was yelled at at ER for not being able to keep my body still during a painful spasm attack. ER doctor said he never heard of stiff person syndrome, pinched my legs while I begged him to stop. Anyone drug sensitive to IVIG and Copaxone?
don't know what's worse , my debilitating side effects or diseases. neurologist recommending plasma exachange next. If anyone can suggest anyhing, I would be so grateful.

Hunting for some insite, My husband is 47 years old in the last year he has became pretty Ill.His first visit started off with a bang of a long line of miss diagnois. He was seeing a orthopedic doctor and was to do a full back spinal MRI in MRI he suddenly could not breathe and had to be taken out which we now figure it was a anxiety attack. But we lost insurance and now he has been going to see clinic Doctors.

When we first went in we were glad to find out that he was seeing the head of the clinic for a doctor hoping finally to get some answers. He gives him IBS meds and Prostate meds for BPH,he went back three weeks later and let him know that it did no good. He then sent him to a Gastrologist.

This doctor decisded to do a EDG but he did not think that this was a gastrol problem he felt like it was a Arthitis problem or what they call Stiff mans Disease, this was the first we had heard of that, so he did the EDG and found out that he has GERDS but said that this had nothing to do with the pain that he is experience, he told me that he was sending a letter to the PC and letting him know that he thought he need to move quickly to find out what is going on he was in bad shape course letter never wrote. So we went back to PC and he says well everyting looks fine and then ask my husband as well as me do we exercise. Why me Crap if i know but as for my husband he can bearly stand.

I take a moment out of this story to list what my husband has experienced. He weighted before all this 149 to 153, is 6 11 he has always been a very healthy man. Now he bearly weights 128 lbs, when he trys to stand he says it feels like he is pulling a muscle in his abdomen, and it runs on both sides all the way around to the back. He walks leaning over to the front. He is lucky if he can hold down one meal a day. Has had blood work Urine test, MRI ( cervical was all that was completed has one herniated disc in c5) ultrasound of kidney pancreas, gallbladder, lungs all fine. He use to hunt fish, work long hours and now he only gets out of the bed to use restroom and that is all.

He is of course I beleive depressed and just recently went through a colorscopy testing bladder and prostate everyting fine. He has now given up seeing any doctor he said they dont know and dont listen to him so why should we pay for them to take our money when they dont give a crap to figure what is wrong. Sad part I know how he feels I was injured 12 years ago and went through 18 doctors, PT docs.

I refuse to give up and not figure out what is going on I have searched, it does seem he has this Stiff mans disease but I dont know I just have to think there is someone who has had the same problems and can maybe give some insite as to how they got doctors to listen because we are lost.

Would appreciate any help

yes but the name has been changed to "stiff person syndrome". I've heard of it bc I have it. It's very rare and it often takes years to get the right diagnosis. It's not considered a "genetic" disease but it seems like there are cases where there is more than one family member with it.