Quote:
Originally Posted by ouchmyfoot23
Thanks for your input. I thought it was HNPP for a while, but I'm not bouncing back, seeing as how I have CTS in both arms (didn't know it), arched feet, slow muscle wasting on both sides (the left looked like it was going faster but it could be my imagination because I am left-handed).
Doc assumes the carpal tunnel is bilateral because of the muscle wasting. On my left arm, I had:
"Left median sensory conduction was slowed (46.4 m/s) with borderline SNAP amplitude... Left median distal latency was prolonged (4.0 ms) with reduced CMAP amplitude and borderline conduction velocity... Left ulnar motor conduction velocities were slowed across the elbow (17.7 m/s) with normal distal latency and reduced CMAP amplitude."'
That was back in early February and the muscle wasting has gotten worse since then. All this happened without injury.
So indeed, it may just be HNPP or something autoimmune with something exacerbating the symptoms.
My neurologist didn't advise physical therapy on the drop foot, he just ordered an assessment of my arm. He even told me PT would be pointless.
When I speak of these "body attacks", they come and go and I seem to bounce back within two days. Who knows, maybe they are severe panic attacks manifesting themselves physically, because I have a history of them for over 10 years.
Again, thanks for letting me vent on your board and for your suggestions. Perhaps I'll read more about EMG/NCV results in regard to HNPP. I am having trouble finding any new information about HNPP because I've been searching the internet for months about it.
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To Ouchmyfoot:
It's a year later, but in case you are still somewhere on this board, I have progressed quickly and scarily for a few years now, just like you. In January, I took matters into my own hands, and began taking low-dose Naltrexone after reading about the help it provided to MS patients (I studied for more than a year, and consulted a pain specialist in La Jolla).
Had to go slow, as exacerbations occurred. One mg per month, until up to 4.5
Six months later, I have less pain (immediately), limbs stopped buzzing painfully while resting, less dropping things, better stomach issues, able to breathe better! I believe the LDN is slowing the progression of CMT1A, and possibly reversing some of my symptoms, slowly. Will let you know more as time passes.
4401pbc