I went to yet another neurologist in the hope of finding the cause of my neuropathy. After looking through all my blood tests (all normal) and cervical, lumbar and brain MRIs (nothing significant), this neurologist basically told me that there comes a point in time when I should stop looking (for the cause). For all of you with idiopathic sensory neuropathies, at what point did you stop searching for an answer?

There are several causes for me and most people I think. The most important thing is to eat very nutritionally dense foods, very low carbs/sugar, get the right supplements and get exercise if possible even if it is just a little. Circulation is important. The mitochondria need to get the nutrients needed, important for the nerves. Finding a doctor that understands all of that is important also.

this might help you to determine when you have had enough testing for your particular PN

lizajane.org

Hi Metro Mom,

My suggestion,( not that I will tell you what to do, but) do not give up, and keep on searching. Only when one can find the underlying cause for the neuropathy, can one hopefully get treatment. That is if the underlying disease /condition is treatable.
In the mean time, do what ever you can to treat the symptoms, diet, supplement, medication etc.

Then seek out another neurologist, yet again.

Look up the link from echoes long ago, and find Liza Janes Chart. This has a very good collection of diagnostic lab tests and other diagnostic tests for diagnosing cause and neuropathy.

Use these charts and take them to your doctor and ask to have the necessary test done for your particular neuropathy.

I have been searching out so many different doctors (majority of them were neurologists) and have been told so many different unbelievable things.

I did, however receive the diagnosis of neuropathy, The neurologist at the nearest University Teaching Medical School, diagnosed me with Sensory motor polyneuropathy, and also small fiber neuropathy, and autonomic neuropathy.
But this doctor stopped after the first set of long list of blood tests(which was normal) and said he did not know the cause, other that " you have to be careful with sugar" Well, I know that, but all my glucose test are normal, even glucose tolerance test and Hgb. A1C.
So I went to The Mayo Clinic. They did not do much more there, and said it was "idiopathic"

I started to have some rheumatological symptoms 2 years ago. Saw a rheumathologist, and she has worked with me ever since. She has treated me for vasculitis and 7 months ago diagnosed me with Rheumatoid Arthritis.
She has never given up on me. She thinks that perhaps I have had the arthritis, and it first presented with neuropathy.
I am now starting to feel a little bit better, and the burning neuropathy pain is a little better.
I have even tapered off a little on both Lyrica and Amitripthyline that I have been taking for neuropathy pain.

So try to find the underlying cause. I have seen about 9 neurologists in the last 3 years.

All the best to you

I think the doctor tries to find a reason for the neuropathy mainly to look for a cure, to reverse it. This is a pretty small window of time, if they can find out, it is caused by blood sugar, or pinched nerve, etc. then it can be reversed. Since there are no cures for PN, all they treat is the symptoms. That being said, they find that there medical bag is quite empty of choices, so then they just try to mask the pain, with anti convulsants or anti depressants. At that point, the Dx is pretty much for the doctor to prove it is physical and not just mental... But maybe someday when they strt to find cures, then it might be worthwhile to know what causes it.

Thank you all for your responses.

I have brought Liza Jane's charts to the last 2 neurologists I've seen but they don't see the need for further testing.

I don't like the idea of giving up my search. It's like giving up the little glimmer of hope of getting the proper treatment for the underlying cause and not just masking the symptoms.

I have another appointment with a neurologist on the 17th of September. Hopefully, he can find some answers.

Generally MD's have a fairly small amount of knowledge compared to what is known about the body by humankind as a whole, and they generally 'understand' only a narrow topic in the body, and not how all the system of the body work together to form health or disease. Look to other types of doctors and clinicians, for example chiropractors or naturopathic doctors (ND).

Many doctors who learn their hands are tied in the medical system in this country do their work in others countries like Mexico. See extremehealthradio.com, John Bergman's videos on youtube.com, neuropathydr.com. There is much healing going on, although I do not find a lot about neuropathy in particular.

To begin healing your body, eat a whole foods plant based diet, avoiding processed foods (especially simple carbs) and animal products. Easier said than done, I know. Avoid toxins. Don't think of the PN as a problem in certain areas of your body, think of it as a problem in your body as a whole.
Ron

You can find integrative MD's online and ask about doctors in your area.