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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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Junior Member
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Hello All!
I hope you all are doing well! I thought my MG was improving although I have been having terrible fatigue and my hair has been falling out. I try not to be, but I am vain so this has been a terrible stress for me. Anyway, after 4 months of doctors not taking me serious, I finally got some bloodwork back, and now they are telling me I might have Lupus. I had a positive ANA??? Does this really mean Lupus??? So now I have MG, Pernious Anemia and perhaps Lupus. I could not get an appointment with the Rheumatologist for 2 weeks. I was just wondering if anyone else has had this experience or can offer all the valuable knowledge you have. As you can imagine, I am sooooo frustrated. I want to go back to work REALLY badly. I appreciate any input. Thank you ![]() |
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#2 | ||
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Member
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Years ago before giving me the MG Dx the Dr thought I had lupus but then said I didn't. I too have hair loss but we believe it is because of my thyroid {have underactive thyroid} I am now taking thyroid meds and the hair loss is getting better, still have hair coming out but nothing like before. Have you had your thyroid checked lately? The problem with us is that we all seem to get more and more symptoms and feel the Drs think we are "full" of it. I am at the point where I just don't say anything anymore because I am afraid the Dr might start the old "it's in your head" deal again LOL
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#3 | ||
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Junior Member
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Best regards |
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#4 | ||
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Member
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Hey Pepe,
I am so sorry this is happening to you on top of everything else you have been going through. Try not to get too stressed out until you see the Rhumy and he/she figures out what is going on. There is always a chance it was a false positive result. Do you have a rash, specifically on your face? Be sure to follow up on the lab work for the thyroid. I had a lot of hair loss due to a low thyroid and have been taking synthroid for many years. Even on the med I still have occasional fall out, just not as bad. Low thyroid also causes fatigue. I'm so glad you posted and you can vent anytime you like...we are always here for you. I will keep you in my thoughts & prayers. Please keep us posted. Take care. ![]() Hugs, Pat |
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#5 | ||
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Junior Member
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Thank you so much. I do not have a rash at all. The overwhelming fatigue, hair loss and some unusual pains. Certainly, the low thyroid would be the lesser of the two evils. I hope they figure it out soon. Thank you for your thoughts and prayers. |
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#6 | ||
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Grand Magnate
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Pepe, A positive ANA is not specific for lupus. I'm glad you are being sent to a rheumatologist. They can run the lupus specific antibody tests and look at all of your symptoms to make sure (or did they run those?).
I hope you don't have lupus but if you do, it is manageable. I've known a lot of people with lupus (volunteered for 10 yrs. to the local foundation). It's like MG, it can be mild or worse. It's different for everyone. Try not to put the cart before the horse. I know it's hard to wait for answers. And it does really suck to have more than one AI disease (I have 2). Just hang in there and take care of yourself. Pamper yourself!!!!! Annie |
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