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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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11-07-2011, 01:35 PM | #1 | ||
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Junior Member
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I have M.S. and M.G.
My swallowing started getting weeker in the spring. I can't get the click message to my throat to swallow. The food would just sit in my mouth not knowing what to do. I lived on Ensure and pudding for a couple of months. My neuro did two rescue treatments of I.V.I.G. in April and then in June. neither helped the swallowing. In August I was going down fast. The Neuro put me in hospital for another I.V.I.G. resure of a much higher dosage and for 4 days, 10 x the amout each day of my reg monthly doage I get once a month. I became weeker with each day of treatment. The hospital Doctor said that was to be expected and I should start seeing an improvement in a couple of weeks. While I was in the hospital they put in a peg feeding tube, they told me they can take it out when I can eat and drink again. That was in August 2nd and I still can't swallow, not even a sip of drink or my saliva. I have to spit out so I don't choke. This is the Big question ( Why am I able to swallow automatically when I am sleeping)? I don't drool, choke or cough when I'm in the sleep state. I am Thankful for that but it has really confused all my Doctors and me! Today my Neuro did a emg and sfemg and said it was normal. The blood test for M.G. that I had done came back normal. The blood test I had done 7 years ago for M.G. came back abnormal. The Neuro is 80% sure my swallowing problem is not from a M.G. flare. We don't think it's the M.S. because I have no other weakness going on in any other part of my body, plus my MRI hadn't changed. I ASKED HIM TO SEND ME FOR A MUSK BLOOD TEST AND HE SAID YES, O.K. BUT HE DIDN'T THINK THAT WOULD COME BACK ABNORMAL BECAUSE MY ENG AND SFEMG CAME BACK PERFECT. he said he recommends I Get a second opinion from another Neuro muscular specialist in Rochester N.Y. I am tired of all the test and not knowing. The feeding tube is another whole bunch of trouble with stomach problems. Why can I swallow when I'm in a sleep state? I am aware enough to feel my self swallow with no trouble right up to when I become awake and the I start feeling my throat filling with saliva and I can't swallow it. Could it be phyco symatic? Forgive me for such a long post. |
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