Neuropathy treatments: How to avoid scams?

Welcome @banjoman, I'm sure you are right about a lot of so called neuropathy treatments not being covered by Medicare. I guess it depends on your specific diagnosis and your symptoms. Nothing is covered for me other than the neurologist visit and diagnosis which was idiopathic small fiber peripheral neuropathy with only numbness and some tingling in my feet and legs but no pain. There is no medication or recognized treatment that helps with the numbness. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

Here's some information on what Medicare covers for neuropathy treatments - https://www.medicare.org/articles/does-medicare-cover-neuropathy/. The best suggestion I have is to learn as much as you can about your neuropathy condition/diagnosis and what treatments may be available that might provide some relief as there really is no cure. If you haven't already seen the following neuropathy sites, they are a good place to learn more.
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

There are many different discussions in the Neuropathy Support Group where you might find other members who have shared treatments that have helped along with other information. Here's a link that lists the different discussions - https://connect.mayoclinic.org/group/neuropathy/.

Have you already been diagnosed by a neurologist? Do you mind sharing what your main symptoms are?

@banjoman
I have a different question.
My husband has Neuropothy without pain ( good) but he has no feeling in his feet. It is the discoloration that worries me. If he lays down and elevates his feet the discoloration seems to subside a bit. He does have WM and was treated and is doing fine otherwise. He is still anemic.
Can anyone recommend a physician that has a specialty with this?
Thanks in advance.
MH

He is very lucky not to have the pain , the thing that has helped me the most, is a hot water heat massager, with episome salt . I get it as hot as I can tolerate . It makes my blood vessels bulge and creates maximum flow

@mphaddican - is WM the abbreviation for Waldenström Macroglobulinemia (WM)? Here's some information from Mayo Clinic on the different specialists.

"At Mayo Clinic, a team of experts in a variety of areas provides comprehensive care to those with Waldenstrom macroglobulinemia. Your care team may include hematologists, pathologists, radiologists, nephrologists and neurologists. Other experts are included as needed."
-- Waldenstrom macroglobulinemia care at Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/waldenstrom-macroglobulinemia/care-at-mayo-clinic/mac-20360009

@mphaddican

My cardiologist has referred me to a Vascular surgeon for tests and treatment of a like condition. I could only get an appointment no earlier that April 20th. The cardiologist was very optimistic that a positive result would follow.

@johnbishop
Yes it is Waldenstrom. Thank you for your response and the information!
Marylyn

@banjoman

Thank you for the follow up!

Yes, I have already been diagnosed by a neurologist. My symptoms were/are as follows: 1) discoloration of the lower ankles on both legs which has been the case for many years 2) scaling of skin in these areas - the skin is very thin, bumpy and susceptible to scrapes and bruises 3) pain, which is focused on the outside of my big left toe which inhibits certain exercise routines and biking. This condition was brought to the attention my podiatrist who said there was nothing he could do 4) water retention which causes swelling in the feet and ankles for which I take Lasix 5) numbness in ankles and feet.

Now, I have turned to a neurologist and, after he ran many sensory and balance has proposed a treatment plan which we are currently evaluating. Cost of the plan is in the $9,000 range. I mentioned this to my GP and she turned thumbs down essentially treating it as quackery. Since medical professionals pooh pooh the practice of neurology I have to figure out if this is a viable option or not which is why I approached this forum seeking independent reviews of the practice of neuropathy

@banjoman I did look into some of those neuropathy center type treatments early in my diagnosis after being told there are no treatments that help with the numbness. I did buy a medical grade TENS unit built for neuropathy patients and used it for a few months before ditching it. It didn't help at all and it was one of the things the neuropathy centers used along with a few other therapies that I decided not to sign up for a treatment plan.

I also have discoloration on the skin on the ankles and shins of both legs with the right being a little worse. I was diagnosed with lymphedema in my legs 7+ years ago and now wear knee high compression socks during the day to control the swelling. It definitely is worth doing your own research and it's the reason I first joined Connect to find something that may slow the progression of my neuropathy or help with the numbness. Is your neurologist a part of a neuropathy clinic? Just wondering if they have any skin in the game when it comes to signing patients up for the treatment plan?