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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Junior Member
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Hello everyone, I'm hoping Annie or some of the other knowledgeable folks will share your thoughts.
In 2008 I was diagnosed with ocular MG. I don't have any idea what test were done at that time but i do know the results were negative for MG. It took about a year for my vision to return to normal but it eventually did. About a year and a half ago I started having issues with very sore and tired muscles and any time I did manual work with my upper body or even walking any longer distances I would have pain in my back between my shoulder blade and my spine as well as in my upper chest area and I would find it hard to catch my breath, If I rested for a few minutes the pain would subside and my breathing would return to normal. I finally got in to see a neurologist recently and he tested for B-12 and ran an ACHR test. My B-12 level was at 166 and I was put on B-12 shots, once a day for seven days than once a week for three weeks and now once a month. I have completed five weeks now, but feel after about the first two weeks of treatment I really haven't felt any additional change. My ACHR result was a 13, according to the Dr. this is negative for MG. If i understood the Dr correctly, he has no plans on doing further testing, says that the drugs for MG only work for the ACHR type? The Dr also had me do a breathing test that i feel was worthless, I sat in a chair and gave three exhales into a tube, that was it. I told him my breathing issues where when i was actively working but I don't think he listened. My main questions are, I cant really say that i have muscle weakness, my muscles get sore and what I would call tired but i am still so far able to do pretty physical work, can this still be MG? and should I have additional test done and if so, what test. and yes i still have the shortness of breath. Also how long should it take for the B-12 shots to really take effect, when should I let the Dr know things aren't working enough? Any help or advise is much appreciated. |
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