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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#11 | |||
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Senior Member
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I have never had that problem, but one of my friends from my support group here in SA has. His story is @ www.mgsouthtexas.org
![]() His name is Elroy. He is a GREAT guy! MG just stinks! Plain and simple! So called "normal" things can be impossible, but there is a light @ the end of the tunnel! It does get better! Big hugs! Erin ![]() Quote:
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Erin . |
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#12 | ||
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Member
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No, you are not the only one! That's a major side effect and I get it really bad too, especially by the third day. Fortunatly I don't have to take it like I use to, but my neuro had prescribed something that helped, but I'm sorry I forget what it was called. Maybe you can ask yours to give you something. Someone else here may reply with what they take for it. Just be sure to always take it with food, it does help. Some only need a cracker, I had to take it after a meal. I don't know how long you've been taking it, but sometimes as your body adjusts to it, the symptoms lessen some. Hope this has helped a little. Take care, Pat |
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#13 | ||
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Member
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Hi Nicknerd,
When it came to my eyes, I think they did everthing possible! ![]() ![]() ![]() Take care, Pat |
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#14 | |||
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Member
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Thanks so much for the link, Erin...Elroy's 'type' of MG sounds just like mine...Mine is mainly bulbar...The only eye symptoms I have are slightly blurred vision and the not being able to close my eyelids all the way symptom...lol
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#15 | |||
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Member
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No, you are not alone! But, keep trying! I went through several types of treatment before I finally found the one that works for me when the mess-tinon causes gastro problems, opium! Really! Because I was having uncontrollable diareah(sp?) which came on with no warning, he tried several things, but the final was a very, very small dose of tincture of opium and it worked!
Good luck |
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#16 | ||
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New Member
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I take Mestinon with food and slowly adjusted the dose as needed. I found it works as an ark and if you over dose it makes it worse. At first it was hard to sleep for the noise from my intestines. Slow adjustments solved this to the point of the most strength. Now I take Mestinon morning and evening only. Prednisone was the key to me feeling much better. Hope all gets better. SixMile |
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