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Dr. Andrew Rynne
Dr. Andrew Rynne

Family Physician

Exp 50 years

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I've been diagnosed with ALS. First 2 years ago, then

I've been diagnosed with ALS. First 2 years ago, then last year they said I didn't have it, now they say I do again. I'm having trouble believing this is what it is. They say I am very slow progressing, which is good. My left arm is severely weak, but I have good triceps and my left hand is totally fine. I'm noticing slight weakness to the right arm. I also have numb tips of toes and extreme Neuropathy in my feet, especially at night. This seems to come and go in severity. I have no problems with walking, talking, speech or swallowing. I don't have a conduction block on EMG. My GM1 antibody came back 30(which is in the equivocal range). The doc says it's not positive so it's fine. Protein on lumbar puncture was 57 - slightly elevated. I had just finished a 2 week course of steroids(IV and oral). Seems like the steroids could give a false lower protein to me. I'm wondering if this could be an ALS Multifocal Motor Neuropathy or a Lewis Sumner variant of CIDP. I welcome any thoughts or suggestions on how to talk to my doctor about this. I would just like a chance to try IVIG to see if it helps.
Sun, 8 Jan 2017
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