Hello this is my first post. My fathe was diagnosed in January 2011 had the eyes not opening, after spending all day at the hospital and wearing him down he started to slur his words, shocking to see this happening. By the way I suggested that he may have myasthenia gravis, after testing him and admitting him to the hospital. Antibody test came back borderline positive? They kept him for a week and did 5 rounds of plasma exchange. Put him on mestinon 60 mg 4 times a day. Prednisone as well 20 mg. he was released.
Then a month or two later was back in the hospital and had 5 rounds of IVIG. Helped then released. Mind the whole time was very sick with diarrhea with the mestinon.
Then a few months later couldn't breath or hold his head up, talk, double vision ended up in Icu for a week then another week in the step down unit. More IVIG, breathing treatments etc. got some what better than released.
A little while long after visiting neuro doctor at the local VA hospital admitted him again. Gave him 5 or 6 plasma treatments, explaining that IVIG was causing water retention so would probably treat with plasma exchange every 3 weeks. Also increased prednisone to 40 mg day mestinon 3 times a day as that's all he can handle and a small dose of cell cept 2 times a day .
Well after going to see the neuro dr, in December she said they would do treatments as needed, he was doing better at this point, also he told the dr he cut down to 20 mg of prednisone continuing mestinon 3 times a day sometimes diarrhea also keep taking cellcept twice a day.
Ok hears the deal the dr. Thought he said he went to 20 mg prednisone every other day as was going to keep him on that but after cleared up that he was taking 20 every day, then said to do that?
He has now been out for like almost 4 months has cut down to 10 mg prednisone and occasionally takes the mestinon 2 times a day, seems to be doing pretty well eats good holds his head up everything seems to work, but drs. Don't want to reduce his meds. The reason I want him on less meds if possible is because he has sorosis of the liver, so less is best? Right!
To conclude started basic symptoms then went crash active, lost ALOT of muscle in neck arms etc. smaller ya know, is that normal? Now seems to be almost inactive????