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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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My neuro changed my prednisone dose from every other day to every day when I started having MG problems last week and I began to get better with both strength and symptoms. My IVIG has gone from 5 days every 14 days to 5 days every 21 days for the last two cycles. My strength was improving....
In the meantime, I have been trying to get off tramadol from my thymectomy surgery since the end of December. Since then, I have had a combination of all of these sx at some point: diarrhea, shakiness, chills, nausea, night sweats, sneezing, lost 4lbs this week, loss of appetite, and sweating. Tingling in feet started within first week of tramadol withdrawl as did diarrhea, insomnia on and off, sneezing and loss of appetite and all have persisted. After dropping my tramadol dose just slightly, I started getting winded up the stairs. Then I went for a walk and stumble and fell and couldn't walk for an hour. The next day I was fine until dinner when I started choking, breathing increased astronomically and I lost all strength in my legs and couldn't even get out of a chair. I went to the ER which was horrible!! They did ABG's and said I was normal (see: hyperventilating I found out later) and my oxygen saturation was 97% and up so they said it was anxiety and sent me home. The only good news is that my strength has improved. I am still having trouble breathing. My voice is very weak and hoarse and I have a cough that sounds like just air at times between mestinon doses. I can count to the 20's. My respirations are 22-30 at rest and very high if I do anything, even speak. I raised my mestinon a bit which my neuro okayed which has just got me by so far. It's been since Sunday. Oh, my doc ordered pulmonary function tests and they did not perform even one! I asked for oxygen and they said I didn't need it and wouldn't give it to me. The doc ordered a hydration IV and then they didn't give it and when I asked they said the orders weren't signed. No one notified my neuro I was in hospital, I had to page him twice from the ER 12 hours later!! Oh, and I forgot to tell them I was on tramadol since I take so many meds so they might of ran a tox screen and thought I was a illicit drug user. How do you know if it's MG vs tramadol withdrawl? What do you do to get through it? How do I know when to go to the hospital when all my sx were considered anxiety? What do I do? debra |
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