Mayo Clinic Connect
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.
Liked by nan45, Austin McGinley
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.
Liked by nan45
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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.
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?
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.
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.
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
Yes. Try to find the best one where you live
Talk to your family physician.
Sorry about your husbands reaction. Glad you were able to help him. Does he have MG?
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.
Sorry. Has your husband been recently diagnosed. What kind of treatment is he getting. Mine is on mestinon and ivig treatments.
He was diagnosed in year 2000. So no not recently. He is just on Mestinon(5 tablets a day). He is supposed to take a rest/nap for about 45 minutes around noon which he doesn’t always do. He can close his office door and has a recliner there. He just doesn’t want to take the time.! There is a support group near here; he goes to those when he can. There is a monthly newsletter he gets from the Minneapolis area.
It took over five years to find out what I had. I was having double vision on the highway with my vision also not seeing clearly. I had seen many doctors with no results.One of the last major places that I was seen keep looking at my blood with no results. They finally told me I was imagining all this. On a sales trip to North C. I had a horrid trip back in the dark. Missed a turnoff and finally found a motel with a room at 3:00 am. While driving the overpass’s were stacked two high as well as the trucks. Wish that doctor could of been with me.
Finally another doctor placed an ice pack on my left eye which was drooping and figured I had MG. H sent me to a specializes at a large university. He discussed my case and then had me come back in one week. There where many doctors and nurse’s in the meeting at which point he injected a drug and then watched my eyes. He then confirmed I had MG.I walked out to where my wife was sitting and I was smiling. Shes asked, why are you smiling. My answer was because now I know what i have and we can try and fix it.
I now have Prism’s in both of my eye glass lens’s along with taking Mestinon. When I awake in the morning and head to work I can stand tall with a good stride walking to my vehicle in my remote garage. By noon if I took no rests I’m heading down hill with slouching and taking short steps. If I overworked on a project chewing of my lunch does not work sitting there-waiting for my strength to somewhat return so my jaw will function.
In the evening sitting in my recliner my left leg is twitching which is on going. also if i over work during the day my double vision try’s to come back in spurts.
So the surgery helped? We think I’ve had MG for over 2 yrs. Was just diagnosed this July (2012). they are still trying to find the right med. combination. I guess this just takes time. I’m just soo dam tiered of being tiered. I’ve heard of that the surgery isn’t for everyone. do you know of any Hospitals in New England area that specialize or have a program for MG?
You mentioned a leg twitch. Do you also have restless leg syndrome?
Have other people had negative reactions to the generic version of Mestinon?
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