Myasthenia Gravis and Stiff Person Syndrome

Posted by Southern Bell @southernbell, Oct 5, 2011

I have been diagnosed with both these autoimmune diseases in 2009. Has anyone had an experience with both or either?

I”m told that each disease is very rare and to have both is about 1 in 1million chances.

Southern Bell

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I realize this may be an older post, but I will comment anyway. I was diagnosed with Myasthenia Gravis in 2006. I recieved treatment both with a neurologist in Waterloo, IA, as well as haveing treatment and surgery preformed at the Mayo Clinic/ St. Marys Hospital in Rochester MN. I have been symptom free for about 5 years now, and am not on any sort of medication. If you have any comments or questions please let me know and I will try to give you any answers I can.

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@adscheer

I realize this may be an older post, but I will comment anyway. I was diagnosed with Myasthenia Gravis in 2006. I recieved treatment both with a neurologist in Waterloo, IA, as well as haveing treatment and surgery preformed at the Mayo Clinic/ St. Marys Hospital in Rochester MN. I have been symptom free for about 5 years now, and am not on any sort of medication. If you have any comments or questions please let me know and I will try to give you any answers I can.

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My husband has just been diagnosed with mg. He is 59 and in good health besides this. He is having tests performed by a good neurologist where we live. So I don’t know all the results re: his diagnois. His main problem started out with sppech, eating, and then swallowing problems. All of the sudden his speech changed, not slurred, just very different, and anyone would notice it. Guess he had bouts of talking like a person that has had a stroke. It comes and goes. he has been put on the first medicine they give people with this disease.Mestinon. It has helped some with his speech. I am so glad about your recovery. If I find out if his case is mild or severe should I consider Mayo Clinic or another top treatment center for his disease? I am doing a lot of research. He needs to keep working. We do not know how his MG will progress. Any help on anything re: MG would be so helpful to me. You can tell me what I should know. Why you went to the Mayo Clinic, if you would like. Just any information that can help me. Thank you so much for writing Adscheer. You are giving people hope with your story.

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I don’t know (yet) what myasthenia gravis is. All know is that during each night, I get extremely painful muscle contraction in ,my legs and am generally feel every muscle in my body is sore & stiff. I have carpal tunnel, questionable auto-immune issues…elbows or feet swell quickly and then go back to normal I’m 80, generally in excellent health. Also have restless leg syndrome – big tine! Requip helps. Should I see a neurologist?

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Hi everyone, I just joined the site today. I was just diagnosed with Stiff Person Syndrome. I no that it is 1 in million that will have it and I am scared all the time. 15 years ago while deployed to Pakistan, I started getting stiffness and could not walk and very afraid for someone to startled me or call my name. Anything that I have no control over scare’s me including having me in the spot light. The end result will be to fall like a domino and I had no control how to fall because my body is stff. I just retired from the military and did not want to but I did it to protect the young soldiers that depend on me to get them home from war. I could not do this so I left. For 15 years the military doctors were pushing anxiety pills and just like week after a test, I came up positive for SPS. I have no idea what;s next, I am hurting about my career and scared for my life. Any advice will help.

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@adscheer

I realize this may be an older post, but I will comment anyway. I was diagnosed with Myasthenia Gravis in 2006. I recieved treatment both with a neurologist in Waterloo, IA, as well as haveing treatment and surgery preformed at the Mayo Clinic/ St. Marys Hospital in Rochester MN. I have been symptom free for about 5 years now, and am not on any sort of medication. If you have any comments or questions please let me know and I will try to give you any answers I can.

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I signed my husband up for this discussion or joined it for him to comment but until he does I want to say that he tried the generic version of Mestinon and had very serious side affects. First he broke in a rash all over his body and unbeknown to him it was also inside his stomach. He got an ulcer in the stomach which was bleeding. I rushed him to the hospital when he couldn’t stand. By morning it would have been too late.

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@lora

Hi everyone, I just joined the site today. I was just diagnosed with Stiff Person Syndrome. I no that it is 1 in million that will have it and I am scared all the time. 15 years ago while deployed to Pakistan, I started getting stiffness and could not walk and very afraid for someone to startled me or call my name. Anything that I have no control over scare’s me including having me in the spot light. The end result will be to fall like a domino and I had no control how to fall because my body is stff. I just retired from the military and did not want to but I did it to protect the young soldiers that depend on me to get them home from war. I could not do this so I left. For 15 years the military doctors were pushing anxiety pills and just like week after a test, I came up positive for SPS. I have no idea what;s next, I am hurting about my career and scared for my life. Any advice will help.

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NORD has info. About stiff person syndrome. It has a website and is about rare disorders. Hope you are feeling better and I’m sorry about your situation

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@austinmcginley

I don’t know (yet) what myasthenia gravis is. All know is that during each night, I get extremely painful muscle contraction in ,my legs and am generally feel every muscle in my body is sore & stiff. I have carpal tunnel, questionable auto-immune issues…elbows or feet swell quickly and then go back to normal I’m 80, generally in excellent health. Also have restless leg syndrome – big tine! Requip helps. Should I see a neurologist?

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Yes. Try to find the best one where you live
Talk to your family physician.

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@adscheer

I realize this may be an older post, but I will comment anyway. I was diagnosed with Myasthenia Gravis in 2006. I recieved treatment both with a neurologist in Waterloo, IA, as well as haveing treatment and surgery preformed at the Mayo Clinic/ St. Marys Hospital in Rochester MN. I have been symptom free for about 5 years now, and am not on any sort of medication. If you have any comments or questions please let me know and I will try to give you any answers I can.

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Sorry about your husbands reaction. Glad you were able to help him. Does he have MG?

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@adscheer

I realize this may be an older post, but I will comment anyway. I was diagnosed with Myasthenia Gravis in 2006. I recieved treatment both with a neurologist in Waterloo, IA, as well as haveing treatment and surgery preformed at the Mayo Clinic/ St. Marys Hospital in Rochester MN. I have been symptom free for about 5 years now, and am not on any sort of medication. If you have any comments or questions please let me know and I will try to give you any answers I can.

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I guess I didn’t mention that; yes he does have myasthenia. I mostly wanted to warn others about the generic version. Not that everyone would have the same reaction. He could get the generic from the VA. Mestinon is so expensive that he is in the “doughnut hole” by this time of the year and it goes up every year.

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@adscheer

I realize this may be an older post, but I will comment anyway. I was diagnosed with Myasthenia Gravis in 2006. I recieved treatment both with a neurologist in Waterloo, IA, as well as haveing treatment and surgery preformed at the Mayo Clinic/ St. Marys Hospital in Rochester MN. I have been symptom free for about 5 years now, and am not on any sort of medication. If you have any comments or questions please let me know and I will try to give you any answers I can.

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Sorry. Has your husband been recently diagnosed. What kind of treatment is he getting. Mine is on mestinon and ivig treatments.

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