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Old 08-24-2014, 08:48 PM
Synnove Synnove is offline
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Join Date: Jan 2013
Location: Florida
Posts: 314
10 yr Member
Synnove Synnove is offline
Member
 
Join Date: Jan 2013
Location: Florida
Posts: 314
10 yr Member
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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
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