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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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I do have other autoimmunes, so they tell me I am complicated. I get tested for b12 and I take it sublingually daily because I am missing the part of my stomach that releases intrinsic factor.
You gave me an idea when you said that mestinon helped with gastroparesis so I bumped it up just a bit yesterday and today and the symptoms were much better. No nausea! Still noisy, but I can live with that. These diseases have such a learning curve! I have been using kefir yogurt to try to restore good bacteria. My mind continues to race trying to figure everything out. Thank you for your suggestions. |
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#2 | ||
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Limpy - I am also plaqued by GI issues since this all started.. I feel like at times i have malabsorption. I do have a sibling with Crohns, but they don't think i have that - they are pointing more likely to celiac.. i have been strictly gluten free for 3 years now... though i do test it every few months and regret it... It's hard to have that on top of everything else! Do you get starving frequently??? I feel like I am going to starve to death when my GI symptoms flare! I had horrible gastroparesis and hyperemesis with pregnancy - they coudln't figure out what the problem was... ick.. lots of vomiting then!
I'm due for IVIG In three days and look like my face is almost paralyzed- my eyelids are in my vision and I have a snarl for a smile.... fun times! ![]() |
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#3 | |||
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Member
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Lots of times I can't tell if my stomach is upset because I need to eat or because I shouldn't eat. I find myself going to the cabinets and fridge a lot to try to find something soothing. But yesterday and today have been much better with a little extra mestinon. Do you get a lot of diarrhea ? Embarrassing, I know, but another fun element. Sometimes I can't leave the house because I have to stay near the bathroom.
I am going to see what the GI doctor says tomorrow before I try anything else. |
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"Thanks for this!" says: | bny806 (02-24-2014) |
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#4 | |||
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Junior Member
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I, too, have a host of GI problems. Have you been tested for SIBO? It is a simple breath test that will show if you are excreting methane, hydrogen or both. Methane is commonly associated w constipation vs hydrogen which tends to have more of a diarrhetic effect (thou I'm positive for both methane and hydrogen but my chief complaint is ZERO motility).
There is so much to be learned about the brain bowel connection and with all the work being done on the microbiome I wouldn't be at all surprised if diseases like MG could be cured or at least mitigated by reconstituting gut flora. Btw, I also have celiac and showed positive antibodies for pernicious anemia so, again, I firmly believe they are connected. Good luck! |
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"Thanks for this!" says: | bny806 (02-24-2014) |
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#5 | ||
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Sorry, I know TMI - but yes, i have not diarrhea but loose stools.. when I first got sick - I went from normal once a day or every other day to up to 30 times a day... and STARVING.. eating everything in sight, but lost TONS of weight.. I was sooo thin, it was gross . I felt so awful, and everyone thought surly it was celiac - onset post partum and after medical procedure gone wrong/blood transfusion stress.. it all happened so fast! By the time they tested me and did my colonoscopy/endoscopy I had been gluten free for about 2 weeks, the tests were negative. I have family members with it, so I just adhere to the diet anyways.. it can be miserable
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#6 | ||
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Grand Magnate
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Limpy, You might be lactose intolerant, too.
![]() Lisa, Are you feeling any better? |
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#7 | |||
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Member
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I went to my awesome GI doctor today and told him what I have been experiencing. He told me that I have gastroparesis due to my weak muscles in my digestive system and will probably always be a problem.
He said I may possibly have bacterial overgrowth, so he put me on an antibiotic just in case. I mentioned what Annie said about celiac, so he agreed to test me for that. I really don't think I have it, but got the test to make sure. It doesn't matter what I eat, besides saltines, my stomach doesn't like it. He also told me to go back on omeorazole and to start taking fiber and he will see me back in a month. I have his email address, though in case I need him before then. |
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