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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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I have been sick with some upper respitory(sp?) thing for going on 6 weeks now. I am so exhausted and weak. I go to see doc but regular doc is not in so I see on-call "doc". What a joke. Which part of I am so weak I colapsed the other day does she not understand? Did chest xray and blood test. I am aniemic as usual but otherwise fine. The next morning I wake up and cannot hear and my ears both hurt. I realize nope she only listened to my lungs yesterday, she did not check that. I have been sick for going on 6 weeks. She should have checked everything right?
Sorry just frustrated with doctors. They never take me seriously. Its all in your head, thats how they always make me feel. Anyway I also have asthma, fibro, hypothyroidism, celiac disease, and other stuff. I am just worried that this is gonna land me in big trouble. I woke up feeling weak. That does not happen to me. I started having back pain last night, worse this morning. I threw up Sunday for the third time in my entire life! I just keep feeling worse. I do not know how to get through to my doctor. I am scedueled to have surgery April 14th, thymectomy. How is this gonna happen? Any advice info would be greatly appreciated. I will answer questoions too. Oh yeah I am not on Mestinon because it gives me really bad migraines. I am not being treated right now for MG at all. Because I was just dxed with Ach antibodies 6 months ago. It was believed I had it 5 years ago but always negative until recently. |
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#2 | ||
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Grand Magnate
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Hi. Six weeks is a very long time to be sick. Have they missed something like strep throat? Would they even consider doing a strep titer to see if you have strep running around your body (it's a blood test)?
Do you have an allergist who prescribes asthma meds to you? When I get a lung infection, my allergist always bumps up my Advair for awhile, like a couple of weeks. There's always increased inflammation during bronchitis or pneumonia and it helps. They didn't even do a chest x-ray?!!! Okay, my advice? Go to an urgent care center. It's often amazing how different the care there can be. Tell them you "probably" have MG, are really weak and have been sick for that long! While it hasn't been "proven" to help MG, having caffeine might help you a little! Caffeine is a cholinesterase inhibitor, just like Mestinon and you might not get a headache unless you withdrew from it. No, you are NOT supposed to have surgery if you have been ill recently. Especially something affecting the lungs. I would speak to your surgeon's office about this right away. They may want to reschedule. The risk for infection increases. It is surgery and you do not want to have surgery if you have an infection. Back pain could be kidney involvement!!! Make sure they do a urinalysis too. And throwing up under any circumstances is not normal. Have someone take you to urgent care! It's amazing how having someone with you can make doctors take you more seriously. Even if they don't take YOU seriously, they should at LEAST be taking the condition you have seriously! ![]() One more thing. If you have a pulmonologist, you should have PFT's done. Especially MIP and MEP. They show muscle weakness. It would be one more piece of "proof" that you aren't doing well. They can do regular PFT's at urgent care but not the full PFT's. And have them check your oxygen saturation; not only while sitting but walking around!!! I hope you can get some decent help. Annie |
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#3 | ||
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Junior Member
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I have not had trouble with my asthma for some time now. So that is not being treated as well. Also hypothyroidism, untreated. Blood tests are coming back normal without meds. I have not had a thorough on the ball doctor in over a year. I recently switched to a highly recommended internist and we really havent had the chance to get past my MG issues.
I did have a chest xray, clear. My O2 is always good when I go in, tho goes down a lil when walking. My heart rate and BP was sky high for me tho. Heart rate really went up when walking. I have had PFTs in past and they always say in ER low but okay. Whatever that means? Never heard of doing those specific ones you listed. I am just sick of going into urgent care or ER and getting told everything is fine. I went into ER a few months ago with guarantee they would admit me to get migraine vs mestinon issue figured out. Ended up with ER doc that thought he knew more/better than the docs that set it up. So as usual no result. I have had kidney infections and stones in the past. So this is a big possibility. I dont want to put off surgery ![]() |
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#4 | ||
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Member
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Since you have surgery scheduled call the surgeons office, tell them what's going on and that you are getting nowhere with you doc. When I had a neck surgery scheduled once, I ended up with a lung infection so I called the neurosurgeon to inform them. He set me up with a pulminologist who did the tests Annie mentioned and followed me right up to surgery - he came in and checked me over one more time before they wheeled me in.
Hope this works for you. He has all kinds of incentive to take you seriously! Good Luck and get feeling BETTER! Quote:
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Becky |
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