Hi Mary @maryflorida, I might not be the right person to answer your question. I am the kind of person that likes to know what's wrong with me but I also waited 20+ years before seeking a diagnosis and getting tests to determine whether or not I had nerve damage. The reason I waited was because I was told that if it is nerve damage there was nothing they could do for me since I only have numbness. So you can imagine how I felt when the neurologist examined me and reviewed the nerve conduction study and told me there were no treatments that help with the numbness and to just let him know when it gets worse. I'm still glad I finally got the diagnosis of idiopathic small fiber peripheral neuropathy. The diagnosis got me to think about alternative treatments, supplements and therapies which is how I found Connect.

In my humble opinion, the primary doctor is correct that there is no cure for neuropathy and they only treat the symptoms to remove or lessen the pain. Also, you can help yourself by continuing to do your own research and learn as much as you can about what is available for treating your symptoms and what others have found that helps them.

@rwinney, @artscaping, @jesfactsmon and others may be able to offer different viewpoints or suggestions. As hard as it is, one of the best things you can do is to try and maintain a positive attitude and take it one day at a time which I think you are already doing.

What do you consider that hardest symptom to deal with?

Good evening @maryflorida. It’s me again. How are you this evening. I want to try to help determine which clinician’s nurse is going to take two minutes to grab a bit of skin from your ankle or some other part of the body and get it ready to mail to one of the labs that does the analysis of this special skin biopsy. The goal is to determine what percentage of the sample is made up of healthy, functioning nerves. For example, mine was somewhere around -.09. The average for a female of about my age and weight,etc. is +9.5 or something like that. I don’t have the report right now yet can probably find it tomorrow.

The lower the percentage of functioning nerves, the more likely you will have pain with the SFN. The only thing I can figure out is that the analysis is a bit spendy and insurance may have dictated the providers who can qualify to submit them.

I just may have had a different PPO at that time.

I will also share with you that my neurologist did first send me to a rheumatologist for her opinion. She said that all this neuropathy is just fibromyalgia. In order to receive treatment I would have to give up my medications. I discussed her feedback with the neurologist and together we decided to stay with where we were and be attentive to any reactions or additional symptoms. This is your decision @maryflorida and you have a right to know what is going on.

May you be free of pain and suffering.
Chris

@maryflorida , if I were you I think I would find another PCP. You primary doctor should never refuse to give you a referral if you request to see a specialist. The Neurologist will be more up to date on current treatments that your PCP won’t know about. My PCP was happy to refer me to a neurologist because he knew he wasn’t the specialist. Only when I went to the neurologist did I get the true help that I needed and was diagnosed with a disease that my PCP has never even heard of. My recommendation is get to a neurologist, whatever it takes to do that.