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

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.

I have SPS. Do you still come to this board?