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Next steps and how to cope with pain?
I started to have numbness, tingling, and hypersensitive fingers in both hands last fall. The only precipitating event was strain from using wrenches on tight bolts. Once it started, it has never stopped, so is present 24/7.
It took months to get in to an orthopedic person who ordered nerve testing. My EMG was basically normal with minor carpal tunnel in the right hand. I was given a medrol dose pack, and don't know if it really helped or not.
In January, my feet started feeling cold, tingly and numb, similar to my hands. My primary ordered blood work to rule out diabetes, thyroid, and b12 deficiency. My blood work was all normal, except slightly high b12 of 958. ( I had been taking b12 supplements until two months before the blood work, so possibly elevated from that.)
I can't get in to see a Neurologist until 8 weeks from now. What can I do to cope with the pain in the meantime? Is there another direction I should be looking? Other doctors who might help with a diagnosis? My primary sent me a note after my blood work that said "Just keep doing what you're doing!" as if I am not in 24/7 pain and sensitivity from this issue.
I have recently tried taking alpha lipoic acid and thought it might be helping a little, but recent days have been very painful and worse again.
Thanks for any ideas you may have!
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Hello @dejavu, Welcome to Connect. It's really the pits to have to wait 8 weeks to see a neurologist but that's unfortunately more common than us patients expect. My neuropathy is mostly in my legs and feet and then no pain, just numbness and some tingling. There are quite a few members who have mentioned neuropathy pain in their hands and feet if you want to look through the discussions and comments while you wait for others to respond. Here's a link that lists the discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=neuropathy%20pain%20in%20hands%20and%20feet.
Hoping you get some more answers when you see the neurologist. In the mean time, I would keep learning as much as you can about neuropathy and what treatments may provide relief. One of the better sources of information is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/.
You mentioned your feet started feeling cold, tingly and numb similar to your hands a few months later. Wondering if your doctors checked your blood circulation. Do the hands and feet look blueish?
I've waited many months for an appointment with a neurologist. The referal was made in early December and the appointent is July 17.
Thanks for those links! I was not tested for circulation, but my hands and feet look normal. Sometimes when my feet “feel” cold they actually aren’t.
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1 ReactionIt’s so hard to wait. Each step has taken several months so far. I realize how lucky I’ve been to be healthy until last summer.
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2 ReactionsMy neuropathy is from a combination of Waldenstroms macrglobinemia, with amyloidosis. It is very rare and most primary physicians will never see it. Carpal tunnel surgery biopsy confirmed for me. If you don’t find answers with neuro, seek out an amyloid center of excellence to search for answers.