Just to keep you updated on my progression. I have a likely pathogenic for ALS variant of SOD1 (c.286G to A; p.Ala96Thr) with a variety of symptoms. My most severe is a low MIP and MEP which has qualified me for a non-invasive ventilator at night. I also have LPR, silent reflux, so my vocal cords are burned, throat is sore and I’m hoarse and choke occasionally. My big toes don’t move and others curl under, plus I have abnormal reflexes and now my left hand seems to be effected in the same way my toes were which is concerning me. If I lose one hand I can still manage pretty well, but both will be a challenge. My EMGs keep coming back clean. I can’t get an official ALS diagnose without the abnormal EMG. At least it looks like my dr can get me a placard for my car so I don’t have to walk so much. Rollator cane is on the way. Thanks for following#myalsjourney #medicalmystery
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