Living with Neuropathy - Welcome to the group

I had neuropathy so severe in my feet I could hardly bear to stand on my own two feet, had 3 toes without sensation. You could put a needle in them. So with both pain and numbness I begged my rheumatologist for a nerve study. Sooooo, they set one up. Went to guys office, the man's face is deeply flushed, eyes dripping, nose leaking. He was a mess. Did my nerve study, said no findings of neuropathy. Found out the doc had a terrible cocaine problem. Lost his license to practice. But, my rheumatologist was satisfied. There, see, you don't have neuropathy!!!

So, dropped my rheumatologist, neurologist, went back to my GP, who dropped down my meds, tapering those that needed to be. Not very effective anyway, plus GP was not allowed to prescribe or oversee the methotrexate. Found a good foot doctor who found ways to bring relief by taping my feet to transfer where the pressure would be placed, making his own inserts for my shoes, allowing for the constantly swollen nerves to relax and a chance to cool down the enflamation. Took a year of weekly, sometimes twice a week visits. My feet still give me trouble, but I went from crisis off the charts pain, to just annoying, but I can still walk pain.

Then came...trigeminal neuralgia. 😳The devil. I know neuropathy and the great pain it causes. God bless those wrestling this monster daily! Finding ways to help relieve the suffering besides the meds that mess with the mind, like those being handed out like candy for everything from neuropathy to RA, fibro, muscle aches and pains is hard. (Gabapentin, neurontin, lyrica, etc.) Some are anticonvulsants, which scares me more than the opioids I use.

I have been going around in circles with doctors as you have, but my BP seems to drop but my weight gain stayed the same for 4 months and I barely eat anything at all due to ain I have every time I do eat. The doctors think I have MS but won't test me for it. They are testing for everything else and it's driving me crazy knowing everything is fine and keep getting the medication I don't need. They say I have a chronic illness and put me on depression medication.

What is MS? Do I have anything to worry about, since it's on my report from 1 doctor and they don't want to test me further, or should I leave it alone?

Hi there, My husband was diagnosed with neuropathy about 2 years ago. He is on Medicare and has a supplement insurance also. We have called the Mayo Clinic in Phoenix and Minneapolis. We were told that their programs were full and they were not accepting anymore Medicare patients. Do you know of anyway that he can get into the Mayo Clinic to find out what to do or expect. Unfortunately where we are living his doctors have just said this is what you have, the information we do have come from groups like this one. thank you for your help.

I had neuropathy so severe in my feet I could hardly bear to stand on my own two feet, had 3 toes without sensation. You could put a needle in them. So with both pain and numbness I begged my rheumatologist for a nerve study. Sooooo, they set one up. Went to guys office, the man's face is deeply flushed, eyes dripping, nose leaking. He was a mess. Did my nerve study, said no findings of neuropathy. Found out the doc had a terrible cocaine problem. Lost his license to practice. But, my rheumatologist was satisfied. There, see, you don't have neuropathy!!!

So, dropped my rheumatologist, neurologist, went back to my GP, who dropped down my meds, tapering those that needed to be. Not very effective anyway, plus GP was not allowed to prescribe or oversee the methotrexate. Found a good foot doctor who found ways to bring relief by taping my feet to transfer where the pressure would be placed, making his own inserts for my shoes, allowing for the constantly swollen nerves to relax and a chance to cool down the enflamation. Took a year of weekly, sometimes twice a week visits. My feet still give me trouble, but I went from crisis off the charts pain, to just annoying, but I can still walk pain.

Then came...trigeminal neuralgia. 😳The devil. I know neuropathy and the great pain it causes. God bless those wrestling this monster daily! Finding ways to help relieve the suffering besides the meds that mess with the mind, like those being handed out like candy for everything from neuropathy to RA, fibro, muscle aches and pains is hard. (Gabapentin, neurontin, lyrica, etc.) Some are anticonvulsants, which scares me more than the opioids I use.

Yes. What are the treatments that work? What is the cost? I live in Ohio so this would be very difficult to do. But maybe someone around me does the same. Any information you can give would be great.

I also went to a podiatrist when I first felt numbness in my toes -- he said it was Morton's neuroma -- he gave me two options: have surgery or wait until the symptoms get worse and then do surgery -- I opted for the second one -- when I went back a year later, he said it was not a neuroma, but I needed to see a neurologist, and later was diagnosed with PN -- glad I didn't opt for the surgery because it would not have changed anything

@lois6524 I am having trouble with my feet also. I am a diabetic 2 and in the last month, I have been in pain with my feet. I feel as if I am walking on shards of glass. The podiatrist did nothing--said there was nothing wrong. What does a neurologist do to help you? I would have to drive an hour to get to a neurologist---not one in this small town where I live.
Really need something so that I can walk.
Thanks,
@retiredteacher Carol

@retiredteacher I have small fiber peripheral neuropathy but I don't have any pain. I just have numbness and have had it 20+ years. There are no drug related treatments for the numbness but they normally treat neuropathy pain with medications. There is a good description and information of diabetic neuropathy on Mayo's website here:

Diabetic neuropathy - Diagnosis & Treatment
-- https://www.mayoclinic.org/diseases-conditions/diabetic-neuropathy/diagnosis-treatment/drc-20371587

The American Diabetes Association also has some good information about diabetic neuropathy.
-- http://www.diabetes.org/living-with-diabetes/complications/neuropathy/

You might be interested in reading about Myofascial Release Therapy for pain that may be helpful. It's something I plan to do once I have my knee surgery done.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

A year or so ago I was at a meeting of the Minnesota Neuropathy Association and we had a presentation by the research scientist and doctors who developed some special "shoes" for helping people with diabetic neuropathy walk -- aptly call Walkasins. It had not yet received FDA approval at the time but has now. The first video is of a test patient who had been home bound for several years due to diabetic neuropathy.
-- http://www.rxfunction.com/

John