After diagnosis, do you continue to see your neurologist?
I was just diagnosed in June 2023 with small fiber polyneuropathy. It developed suddenly in February 2023 with some tingling in my calf and foot and progressed rather quickly to tingling in all extremities and spasms in all extremities. And weirdly some breathing issues. So far we can’t figure out why. I am negative for any autoimmune diseases, medication toxicities or vitamin deficiencies. I am suspecting it may have been due to having COVID in 2021 (long hauler?) or have something to do with my body‘s reaction to vaccines and medications. I had ShinGrix vaccines in late 2022 followed by a Covid booster, followed by a Prolia injection. Anyway, my question is this. Will my neurologist continue to follow me? Or after I’m diagnosed, am I on my own since it is allegedly incurable? It took forever to get an appointment with a neurologist! Believe it or not, even though I am in Baltimore, with great medical institutions around me, there appear to be not enough neurologists.
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Yes, I still see my neurologist on a 6 month basis. She is a professor at a medical school, and was a medica “detective” who called in another neurologist in another city for a second opinion when multiple tests produced no diagnosis. They concluded that the cause may be an autoimmune reaction to stenosis, spinal fusion surgery, or other causes like anesthesia, medication, or unrelated infections.
My primary neurologist ordered IVIG infusions, which have helped, and prescribed a power wheelchair with input from my physical therapist. With continuing PT, I have increased function over time and consistency. The pain has lessened, perhaps due to the infusions or to nerve damage, but my leg strength has improved over time and with monitored exercise.
It all takes time, support, persistence, and some luck in finding a curious neurologist. The Foundation for Peripheral Neuropathy does promote research, currently through a Department of Defense grant. Sites like this one remind us that we are not alone.
Thanks for your sound advice. I took ALA for a couple of months with no results. I've read R-ALA is stronger, but haven't tried. Not sure if those two supplements are only helpful with diabetic neuropathy which again mine is "idiopathic". I read labels on everything and avoid B6. What is the B complex?
It has been a week since I had the nerve block done. I have had about a 30-50% decrease in pain in my right foot. Each day is a little different, but over all I feel it has been worth it. I am able to go to sleep easier and sleep better. I will have to see how long it last. There are pros and cons from having a nerve block down. If you want to try it, I hope your doctors will provide it to you. Good Luck. Robert
Thanks for the follow-up Robert. I see my doctor next week and will talk to him about it again..
I'm glad you found some relief and hope it lasts a while for you. Especially if it helps you sleep.
Take care!
Sorry to hear but the reality is I live in the uk and the same frustration exists over here. Just make the best of it and keep on looking. Easy words I know but that is the uncompromising truth that we each of us face no matter where in the world we live. Good luck and don’t ever give up.
Unfortunately you're correct. I Have been TO 2 neurologists in the past 10 years with two Emgs both inconclusive. Then they go right to drugs. My suggestion is if something works to help with the pain go for it.
But I've found I've made progress with some natural common sense I won't say cures but definitely helped me and is helping me. Cut out sugar as much as you can in processed food. I think no matter what that'll just make you feel better and once you get past the cravings you're good. Mine is peripheral neuropathy and back to your point medicine is what and all they know. You need to be your own advocate.
Good luck!
Paul