Marlene Laird
Forum Replies Created
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I believe I had mostly ocular MG for many years, but did not realize what it was. I began having gMG symptoms around 1995 but they were mild. Then in 2001 I got pneumonia pretty bad. It was starting then that the symptoms increased dramatically. I saw a primary care doctor for it, and when he finally referred me to a specialist, that doctor told me he would have had me in the hospital if I had been sent sooner. I had so much trouble breathing that I do not know if it was from the pneumonia, from gMG, or both. When I finally got over the pneumonia, symptoms leveled off, and I was diagnosed and treated for gMG in 2007. I take only Mestinon, 60 mg every 3 hours while awake. I do fairly well, but I’m quite limited in what I can do in a day and I have to pace myself all the time.
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I have generalized MG that started back in the 90’s and was diagnosed in 2007. The twitching is from Mestinon – it happens to me when I take too much Mestinon. I was taking 60mg every 3 hours while awake, but it wasn’t quite enough. So we increased it to 60mg and a half of a 60mg pill. That’s when the twitching started in my muscles, as well as my facial muscles. Also I began having gastric issues that were near unbearable and if I drank milk or anything with milk in it, the symptoms were even worse. So I decreased to one 60mg plus 1/4 of another, and the twitching and gastric issues stopped. Every great now and then I have a little bit of those issues, but it is mild and doesn’t last long. I can drink milk again! The twitching etc. never did send me into crisis.
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I have had the same problems with pyridostigmine. The diarrhea can be really bad, and I had accidents many times. How humiliating! I have a couple of tips. Always ALWAYS eat something when you take this medication. It doesn’t have to be a heavy meal, but a few crackers for example helps your digestive system handle the meds. Also, I have been told that these pills are largely lactose. So I was being lactose intolerant. So if I did not drink milk or anything else with lactose, the symptoms decreased greatly. Also I took (the store brand of) Immodium. Personally I found that there is a sweet spot in the dosage for controlling these effects. If I take no more than one sixty MG and one quarter of a sixty MG pill, I do not have the diarrhea etc. But still, occasionally I do still have problems.
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Double vision, left eye drooping. I am 68, have had gMG for around 30 years, diagnosed in 2007. I take Mestinon, 75 mg every 3 hours while I’m awake. I see normal only if I look straight ahead or down. I have not tried other treatments due to possible side effects.
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I have fallen several times over the years due to gMG weakness. I used to just use a cane when I left the house, or a walker if I had to walk a long way. I nearly fell quite a number of times around the house, then I fell twice within a few days of each other, so I felt like I needed to start using my walker full time to prevent any further falls and injuries. The only time I don’t use one now is in the kitchen because when I’m busy in there I trip over my walker. It’s not a large kitchen, so there is always something to grab onto, so it hasn’t been a problem.
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I have generalized MG. I was diagnosed in 2007, but had had the symptoms for many years. My first MG symptom was double vision, but it came and went with less or more eye strain. I have had double vision constantly since around 1992 when it suddenly started while I was driving. I totally freaked out, nearly got in a wreck, turned around and went back home and didn’t drive much at all for several years. I have light sensitivity as well, but I don’t remember when it began, I’ve had it so many years now. I just did not drive at all at night unless it was an emergency or something I just must do. I stopped driving at all about 3 and a half years ago. It makes life a bit harder to be without transportation, but I order groceries etc. online and have them either delivered or shipped. I enjoy being at home, and it’s a good thing, because I don’t go anywhere anymore except to the doctor.
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My husband and I stay home. We only leave the house if going to get our blood drawn for labs, to a doctor’s appointment we cannot do by phone, or to our grandchildren’s birthday parties. We buy all of our groceries and other things we need online and have it either delivered by Instacart or shipped to us. We also take vitamin D3 pills twice a day. Neither of us have had a COVID shot and do not plan to. I have MG and take Mestinon. He is disabled from neck surgery. Neither of us have had COVID nor the flu or sinus infections.
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Ok, I’ll start the conversation. I have had gMG for around 30 years. It began with my eyes, then gradually affected all my muscles until I was disabled around 2006 when I saw my neurologist and was diagnosed in 2006. My husband is disabled and uses a walker. He is very understanding about my MG when it comes to sex. We communicate openly about sex and discuss it a lot. I think that is extremely important to a healthy relationship. He knows that I can only do so much physically, then I can do no more. When I feel I am at the point I cannot go on, I either switch up what we’re doing, or if laying down I just relax and go limp. That way I don’t have a crisis in the middle of sex. It is sad to me that I can no longer do some of the things I used to do, like ‘riding on top’. My legs just are not strong enough to do that anymore. So we just do other ways. I find with MG in general that I have to find different ways to do the things I used to do, or do other things instead. Yes, it does affect my confidence and self esteem, but I do not dwell on what I cannot do and allow it to make me depressed or upset. We have a great sex life in spite of our limitations!
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I have the same issue with my eyes, and in addition I have drooping of my left eyelid. Fatigue is also a major problem for me, as well as brain fog that is worse at some times more than others. For these reasons, I stopped driving (and working) two years ago at age 67.
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Maureen, you can go to https://myasthenia.org/ to find what drugs and supplements are bad for MG. Print out the list and keep it in your purse or wallet. When you go to any doctor or ER show them the list and the website where you got it from. Also, any time any doctor writes a new prescription for you, remind them you have MG and ask them to check it against the list. We have to be our own advocate. If you are unable to for any reason, take someone with you who can do it for you. They should be able to know about the list, as well as any other information about your MG. Each of us are a different and are affected by different things.