Nerve biopsy test: Is it done by a neurologist or rheumatologist?

@maryflorida Your neurologist can and should do a skin punch biopsy as neuropathy is in their field. However, make sure your neurologist is knowledgeable of the various types of neuropathy, including Small Fiber Neuropathy. It is still widely unknown or understood by some Drs. My neurologist did my biopsy right in his office. It's pretty quick and easy. Good luck! 🍀

Hello @maryflorida, Did your prior doctor who said it was neuropathy do any testing or did they just think it was neuropathy? Sometimes doctors are not in agreement and I can understand how you must feel since you are the one with the pain. Here are some articles on the topic that may help you in a discussion with your doctor.

Fibromyalgia as a Neuropathic Pain Disorder: The Link to Small Fiber Neuropathy: https://www.practicalpainmanagement.com/pain/myofascial/fibromyalgia-neuropathic-pain-disorder-link-small-fiber-neuropathy

Mayo Clnic News Network – Mayo Clinic Q and A: Understanding myofascial pain syndrome and fibromyalgia: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-understanding-myofascial-pain-syndrome-and-fibromyalgia/

Mayo Clinic Newsfeed – Understanding myofascial pain syndrome and fibromyalgia: https://connect.mayoclinic.org/page/adult-pain-medicine/newsfeed-post/health-answers-understanding-myofascial-pain-syndrome-and-fibromyalgia/

Have you considered getting a second opinion for your diagnosis?

Oh gee. She said she would arrange for a surgeon to do this, and after six weeks, she has not.

That's ok. @johnbishop has provided you some great links to research. No two doctors are built the same.

@maryflorida, You will notice that we changed the title of your discussion a little to help members who may have the same question. Thanks for posting the discussion.

I saw my PCP yesterday and asked him to refer me to a neurologist for the test. He said it is not really necessary. The rheumatologist said I have fibromyalgia, based on pain all over my body. Then the PCP agreed with that diagnosis, but when I told him about my icy feet and pain going up my legs, he said that is definitely neuropathy. So, no referral, but only symptomatic diagnoses. My insurance is a Medicare PPO which previously did not need a referral but the last two specialists seemed to need my PCP's referral. (United Health Care AARP Medicare) Bottom line: the Primary doctor said that there is no cure so they just follow the pain and try to deal with it. If you were me, would you want to get biopsy or just let it ride? Thanks.

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?

@maryflorida Hi there. What does your gut tell you? Are you a person who likes proof and evidence? If so, I'd go for the skin biopsy. My neuro never gave the option. He felt strong about my diagnosis being Small Fiber Neuropathy but, was thorough in leaving no stone unturned.

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

At this point, I am not sure it is vital for me to have the biopsy. My husband is actually going to Mayo Clinic in Jax this coming Monday for a biopsy since he had a kidney transplant there two years ago. Maybe I can find out if they can just do this. Since the only treatment is pain relief, is it necessary to have the biopsy? Or if I don't have it, will the government deny me hydrocodone for pain relief at some future time? Scary thought.