Hi all,
I'm new here, don't have official MG diagnosis yet but doctor said she is 99% sure that I have MG because of my SFEMG test results and because I feel better when I take Mestinon. She put me on Mestinon to try it and see if I respond to it. I tested negative for ACH but going to get MUSK test done next week. My question to all of you is did anybody's MG started with crazy strong muscle spasms? That's what I experienced first and that's when I started going from doctor to doctor trying to find out what's going on. Dont know if I can link muscle spasms with MG or it was completely separate issue I had. I will write more later, need to put my little one to sleep now. Geeee it's not easy to deal with MG and take care of the baby. Thanks for reading! Monika

Welcome Monika!

I have never had muscle spasms with my MG. Some people say they get twitches with (too much) Mestinon. My symptoms were (and are) muscles that get fatigued with use - especially repetitive tasks. Then generalized weakness if I keep pushing it!

Lots of folks here with much experience. Glad you found the site. Does Mestinon help you?

Thank you for responding. I was just wondering if I can link those two together. Muscle spasms went away almost completely when I started having new symptoms like fatigue, muscles weakness. I take Mestinon 3 x a day 90mg. I don't always feel the same after taking it so I don't know if that's normal or not but I think it works. I sometimes feel like a "super woman" who can do all my daily tasks after Mestinon which of course wears of in few hours and sometimes I can hardly tell the difference in how I feel before and after taking Mestinon. This condition is so tricky and confusing. Doctor said my SFEMG was not perfect but not bad enough to make MG diagnosis just based on that one test that's why I'm hoping my bloodwork for MUSK will confirm MG or my Thymus CT will show something. In the meantime I started having problem with my left eye, sometimes usually in the evening my left eye is half closed and it looks much smaller and higher on my face comparing to the right eye. That's not just how I see myself in the mirror but also my family members ask me "what's wrong with your eye, are you tired?". I'm so happy I found this forum as I don't have anybody here to vent to. My husband listens to my complains and concerns but I don't think he takes this as seriously as I do.

Your husband needs to understand your disease as well as you. He needs to study and read all he can. My wife goes into all my doctor appointments. She now helps me with this disease. She can tell when I need rest and helps me stay in control of this crazy disease. Remember first blood work usually comes back negative. Get your husband on your team.
Mike

Wow, that's nice Mike. I go to all my appointments by myself as he always has to be in the office. He helps a lot with our 2 year old though when he is back from work. Also food shopping, laundry and in general house duties are mostly his responsibility. Is that true that most people test positive for ACH and not for MUSk? my doctor said 80% of MG patients test positive for ACH and remaining 20% for MUSK. I would love to be healthy again but that's not the case so I'm hoping Musk will be positive so I can get official diagnosis from my doc and treatment other than Mestinon.

Yes only 20% are positive for musk. My first were negative my next test about 6 months later I was positive for 1 antibody. I am now positive for 4. You will take some time to adjust your life style. The worst for me are hot sunshine and stress.
Mike

I have stressful job so can't do much about that for now but don't have as much sunshine in NJ as you in SC. Winter is very brutal especially this year. I love beach and hot weather or at least I did till now as this year will be my first summer with MG symptoms so let's see how I will handle it.

My first summer I had no clue that heat was bad. I went out on open lake for about 45 minutes. I thought they may have to call EMT's. I laid down in backseat of car with A/C on high for about an hour and recovered. The worst is if you get a cold, flu ect. It really gets me down. It is a continuous process.
Mike

plmonica,
All I could tell you was after I started Mestinon I had some muscle cramps with that. I still do a little, not bad.
HANG IN THERE
FREDH

I agree with Fred. I still get cramps after 5 years.
Mike