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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | ||
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Newly Joined
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Background (skip if you want to): I don't not yet have a diagnosis, but I have sooo many symptoms of MG and have looked years for what the problem could be; this matches so perfectly, it's eerie. My sister has MS, but my symptoms are not like hers. I really haven't had numbness or hot/cold issues. She also has Hashis, so autoimmune runs in the family. I do have horrible heat intolerance, weakness so bad my back hurts when I walk less than half a mile, some balance issues from time to time, ptosis in one eye, mild double vision, breathlessness, dizziness when I stand up, fast pulse, a trip to the store can wear me out, every day chores are a burden, unloading the dishwasher can be risky due to my terrible grip. I drop things often, fingers are stiff, and I must take naps or short naps every day if I can to get much done or feel like I can carry on. I have known something was wrong since about 2005 and have gone to doctors on and off about it and have had a bunch of tests (but none for MG! because I didn't know about it until last week), but I have felt ashamed and unsure of myself when others seem to have so much energy.
B-12 I have been having a lot of ocular issues lately and for years now that I realize what it is (mild ptosis on the right eye, eyes closing when I drive, having to rest my eyes during the day, eyelid twitching on right eye, etc), waking up with very dry and red eyes. I figured out to take B-12 in a high dosage for MG after much reading; I am also on Metformin, which depletes B-12. Lovely. I was taking complex B and stopped that. It had only 100 mcg of B-12. I am now taking 2000 mcg per day. I noticed the first day that the ocular symptoms were much better. The eye twitching is 75% better, and it's the 3rd day of taking this dosage. The muscular weakness that I have in my back, legs, arms (extreme), shoulders, and neck isn't showing much sign of abating, though. Has this been the case for others? I am also taking a large dose of Vitamin D now (50,000 mg per week) and 1000 mg of Vitamin C per day. I hope to get in to see a neuro soon, but I am dealing with my son's developmental issues right now. Any thoughts on B-12? I have a feeling that I really need to get a diagnosis and be put on Mestonin or some of the other meds I am reading about. I am tired of feeling so poorly, and my son needs me as does my daughter. I'm only 37, and I have felt lousy for 10 years or so now. I have actually had symptoms for many years. They just got bad over the last decade and worse since the birth of my 15 month old. Thanks for reading!! |
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#2 | ||
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Grand Magnate
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Hi, gazelle. Welcome.
How long have you been taking Metformin? It can cause lactic acidosis. Do you have any nausea? Why did a doctor put you on it? What type of B12 are you taking? Cyanocobalamin or methylcobalamin? If you can get into see an internist, they can run some basic tests, plus the Acetylcholine Receptor Antibody panel. If you're feeling so badly, you really need to go in! Some clinics have evening or weekend hours to accommodate people who work or are full-time moms. If you have MG, you really need help right away. MG is all about muscle weakness that gets worse the more you do and better (relatively) with rest. Does your weakness seem as though it's fatigable? Vitamin D is usually in IUs and not MGs. 5000 IUs per day, or 35,000 per week, is what most docs think of as a max amount. Did you have your vitamin D tested beforehand? What about your B12? Do you know what it was to begin with? I hope you can go in and get some help soon! There must be someone who can help you with your kids. You're no good to them in this shape. Take care of you first! ![]() Annie |
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"Thanks for this!" says: | juliejayne (10-06-2014) |
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