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Thursday, March 30, 2017
Anti MuSK and Treatment Options
I have been living with my symptoms for over 5 years now, having previously been tested for MS, Guilliam-Barre, Lupus, etc.. and ultimatley dismissed as chronic fatigue- which never really fit with my eye involvement.
After a recent change in my symptoms (included dysphagia, dysphonia, and a mild dysarthria with an increase in fatigue and weakness and some shortness of breath)I was recently referred to a new neurologist by my ENT. This neurologist has suggested that my symptoms are more `bulbar` and most likely related to MG-MuSK. He sent me for blood work for the Anti MuSK and anti ACh receptor antibodies. The ACh was negative, the MuSK needed to be repeated as the lab coded the test wrong and I still have not gotten the results.
The neurologist had started me on mestinon after my physical exam, but my symptoms seemed to continue to worsen rather than getting better. I became weaker and more short of breath even without exertion. I cut my mestinon in half and saw some improvement. I then saw a pulmonologist (I had to fight to see the pulmonologist with the neurologists office because I was told shortness of breath was unrelated with my illness, and then my PCP who told me I was just having a panic attack) The pulmonologist found no problems with my lungs, but determined a muscle weakness with my diaphragm that has resulted in a reduced lung capacity. He said this may be consistent with MG and also agreed my symptoms seemed to be more `bulbar`. I am looking for more information on the MuSK form of MG as well as the actual effectiveness of the Mestinon for this. I realize it would take time to find the right dose, but I feel my symptoms have leveled off, and still are not improving. Is the treatment the same for MuSK as it is for ACh? If the antibodies are different would the Mestinon have the same affect on the MG-MuSK? I think most likely I have made it through the last 5 years in a semi-remissive state, and now things are more active, so perhaps my expectations are too high for the Mestinon? I feel like I am early in the stages of a diagnosis for MG, yet very late coming to this point after 5 years with no treatment. I am really not sure what I should be looking for or asking of my neurologist at my next appointment...and if the MuSK is negative also, can this still be MG?
Thank you for your time!
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