Maria
Forum Replies Created
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I was diagnosed seronegative 31 years ago. Over the years it has gotten worse. I’ve tried IVIG and all the immunosuppressants without much luck. Very interested in hearing what others have found successful.
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I’m so sorry, Peggy! Thank God for our dogs!
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Like most, I can’t do what I once did, and for that I do feel like a burden. I have a very small world and because of that my husband’s is smaller. We moved 3 years ago to a Florida retirement community. I haven’t been able to participate in the activities I had hoped. I encourage my husband to play as much golf as he wants. But there are many evening events that we don’t attend because I can’t.
But I remind myself over and over again, not to judge myself for what I can’t do. AND that I battle MG and other health issues every day and I’m still here and somewhat functioning, so I won that battle that day!
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What (had never heard of it)
Hope (that I could live that normal life)
Resignation (that my life will never be normal, made adjustments and am making my life as good as possible.)
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I’ve been diagnosed for 30 years. Some doctors said/say I don’t have it because I’m antibody negative. But the doctors I trust the most, say if it walks like a duck and quacks like a duck, it is a duck. Unfortunately, I’ve been on prednisone most of that time. Anywhere from 20 mg to 100 mg. I don’t think I can survive without it, as much as I would like to not take it. I’ve learned over the years, I have to trust my gut. I do want sound medical advice and I would love to not have MG, but I do. Do what you think is right and try your best to find a doctor who listens to you. Best of Luck!
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I agree Marlene. I’ve had MG for 30 years. I hate the way it invades every part of my life, but I can’t dwell on it. I try to think about what I can do. I miss the sex life we did have, but we try to make the best of it. My husband jokes that all I have to do is lie there, which is the way it usually ends up. But if we get to have that closeness that’s all that matters. At this point, age would play a part of MG didn’t.
so glad someone is finally talking about this! -
I lived not far from a tannery for 18+ years. The building was later demolished but nothing could be built on the land because of the contamination. There was also a gasoline refinery that produced a huge orange glow nightly. I was told it was very possible that it caused my myasthenia.
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I, too, find myself resenting those that can do. It is very difficult when your independence is taken away. Most days, I can’t drive. (Some days, I can’t walk.) I don’t like myself when I feel jealous, but I tell myself it is normal to some degree. I really hate when it is my husband I find myself resenting and being jealous of. He does so much for me, but that is not what I want. I want to be the person who can be active with him and my friends. I try to remember all I have and all I can do and be thankful for those, but I’m not perfect, and often have imperfect feelings. I’m not sure how to overcome them and hope I figure it out soon before the next wave hits.
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They are amazing! It allowed us to stay in our home for years. My husband retired last year and we moved to Florida to a single story home. I didn’t realize how much the stairs were draining me because I only used the chair if I felt I needed it, so most mornings, I didn’t. Boy was that stupid! I could do so much more here and the only thing I can attribute it to is no stairs. And of course, my husband said “I tried to tell you.”
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COVID was a scary time. Especially at the beginning. I was very scared. I’m still cautious about where I go. And like you, I do have a husband who is very helpful. I don’t know what I would do without him. Best of luck and wishes for some good days.
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Sorry you have too many health issues too! As if, MG is not enough. Thanks for the info. My bone density is a problem. I’ve been on prednisone for over 30 years from 10 to 100 mg a day. I can use all the help I can get. Best of luck with the neurologist!
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In addition to the Mestinon, I’m on 20mg of prednisone daily. I know that it has some bad side effects, but the good outweighs the bad. Found a doctor who finally said if it looks like a duck, it’s a duck. And began treatment. But that took me a couple of years. Best of luck!
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I’m very happy for those that can live that normal or almost normal life. Mine is not. I’ve had MG over 30 years. I’m double antibody negative, which I know plays a huge part in my situation. But when I was first diagnosed doctors told me I could live a normal live. I’ve tried every treatment that a doctor said was a possibility. So I think you can understand how frustrating I find it when people say a normal life is possible. For the newly diagnosed it brings hope, which may be false. I think all outcomes should be discussed.
I had to quit working years ago. I no longer drive, very seldom travel anywhere, and need help walking on a daily basis. That is not normal. I’ve made adjustments that help me find joy in this life. I think making those adjustments would have been easier if I had not tried to find and live that normal life.
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Hi everyone. I too am antiobody negative. I’ve been tested so many ways. It has been difficult to find a neurologist that actually believes me.
BBernatte, your diagnosis sounds a lot like mine. The tesilon test is the only test that had positive result. But clinically I present with MG. (If it looks like a duck and quacks like a duck, it’s a duck.)Double vision was also my first symptom and continues to warn me when my legs are about ready to give out. My legs are my biggest issue. I have trouble swallowing and generalized weakness.I’ve had every test and been on a variety of treatments, prednisone, mestinon, cellcept & IVIG. Currently I take prednisone and mestinon. I had hoped the IVIG would make my symptoms more tolerable, but……..so if anyone is doing something that allows them to get through the day, please share.
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I, too, have shortness of breath with any excertion. When I lie down and still continues, I know I’m in trouble.
Don’t you love it when doctors give up on you? Good luck at Mayo!