Next steps..

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Bschadd

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Learn about ALS
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Bonita springs
Hello. Thanks for reading. About 3 years ago i started to have tremors in hands and i was losing strength in my thumb and hand. Figured hand was due to bad mountain bike crash a few years ago.

Fast forward. I had a massage which left me with a herniated disk and pinched nerves. Come to find out 3 herniated discs and other crap in my neck from my various activities. Since 2020, I have lost muscle and strength throughout my body, noticeably in my left arm and hand, measured by doctors. The left hand and arm is rather severe and the right is catching up. Severe burning in arms. Loss of coordination and balance, although no falls. Full body tremors and muscle twitches. I

've had numerous mris, xrays, and ct scans. Aside from the neck, nothing outstanding. I've lost 20 pounds, which was a significant amount for me. Emg and nerve test revealed early neuropathic changes in arms probably due to pinched nerve. Same as legs, although mri reveals a very healthy lumbar area. 5 neurologists and still no closer to figuring it out. I have been told its my neck, or thyroid, and don't mountain bike down mountains any more. Clearly.

2 neurosurgeons. Neither thought sx was appropriate but did offer 3 level fusion if I really wanted sx. Nope.
I am skin and bones. My left arm is a half inch smaller than right. My legs are jello. My wrists have lost rom. No strength in fingers. My legs ache and wobble. Went from hard core endurance athlete to struggling carrying a bag of groceries or opening the patio door. I put off clipping my nails because as long as possible because it is such a struggle. Writing is a struggle. I have completely lost my sense of identity. I went from the strongest I have ever been to weaker than my 82 year old mom.

I have another neuro appt in 2 weeks. Any suggestions on what to ask or request would be greatly appreciated.
 
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lgelb

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I am very sorry for your troubles but do not see any reason for you to be here. Clearly the EMG did not reveal anything suggestive of ALS.

If surgery is not appropriate for your spine issues, I would seek PT/OT at a back center, preferably directed by a neurologist or physiatrist (rehab specialist physician) with cervical spine expertise, who might also suggest referral for interventional procedures such as injections if PT is not effective. I would definitely stay away from any general massage or other therapies without specialized medical support.

Best,
Laurie
 
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