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Posts (5)

Oct 17, 2012 · Myasthenia Gravis and Stiff Person Syndrome in Autoimmune Diseases

Yes my left leg has a twitch from my hip to my toes. This has been going on for a couple years. There is no pain with this. The twitches are spaced apart in ten seconds. It is mostly seen while in a recliner with the foot rest in the up position.A lot of nights I wake up and my toes are turned up with pain. I then get out of bed and stand on the floor and it all goes away, only takes a few seconts to get back to normal.

Oct 3, 2012 · Myasthenia Gravis and Stiff Person Syndrome in Autoimmune Diseases

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.

Sep 30, 2012 · Myasthenia Gravis and Stiff Person Syndrome in Autoimmune Diseases

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.

Sep 27, 2012 · Myasthenia Gravis and Stiff Person Syndrome in Autoimmune Diseases

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.

Sep 24, 2012 · Myasthenia Gravis and Stiff Person Syndrome in Autoimmune Diseases

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.