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Neuropathy: Numbness only, no pain
Neuropathy | Last Active: Apr 18 3:20pm | Replies (503)Comment receiving replies
Hi @patc55, Welcome to Mayo Clinic Connect. I have SFPN which started in the toes in both feet more than 20 years ago. I don't have pain with mine either but like you it's more of a discomfort. I also have advanced degenerative arthritis in my left knee and had a knee replacement done for my right knee in 2019. There is some evidence linking SFPN and autoimmune diseases.
"Systemic autoimmune conditions linked to SFPN include lupus, rheumatoid arthritis, sarcoidosis, vasculitis and celiac. Sjögren's is the most common among these Virtually nothing is known about how systemic autoimmune diseases affect small fibers. Nov 3, 2017"
- IVIg for apparently autoimmune small-fiber polyneuropathy: first analysis of efficacy and safety: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5791555/
If you are looking for more information to learn more about your diagnosis, here are a couple of websites I have found helpful:
- Neuropathy Commons: https://neuropathycommons.org/
- The Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
Were you diagnosed by a neurologist? Just wondering if they gave you a specific diagnosis or did they just say it was idiopathic SFPN which is my diagnosis.
Replies to "Hi @patc55, Welcome to Mayo Clinic Connect. I have SFPN which started in the toes in..."
John, I will also look at these websites. Thanks again.
I had discomfort in my feet for a number of years. Numbness on the bottom, stiff, swelled feeling. I kept asking my doctor about it and she said it was probably high arches and “to get better shoes.” Had she actually looked at all my symptoms I had together, including, anemia (even though I took lots of iron) and constant itching (diagnosed as “dried skin”), and then sent me to get a blood test, she would have found I had Primary Biliary Cholangitis, an autoimmune disease. Finally, in June 2019, I was having severe pain on both sides of my abdomen and got that blood. I was diagnosed with PBC, which having been undiagnosed for years, had led to stage 3 liver cirrhosis.
I am alive due to a liver transplant, which certainly is a blessing, although my feet have gotten much worse and painful. I also now have increasing numbness in my right leg, occasional sharp nerve pain in my legs, and sore joints, which started after the transplant. My doctors believe it is probably due to the anti rejection medication.
My summation: the body is amazing, but can also be extremely weird. And, if you don’t agree with your doctor, don’t wait for a better answer! Find another one and insist on a comprehensive blood test.
Also, I just want to say I am so grateful to all of you for sharing your experiences and insights. I have gained so much from this and the resources you share.
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John, I was diagnosed by Dr. John England who is the head of the LSU School of Medicine Neurology in New Orleans, Louisiana. Dr. England did extensive testing before rendering my diagnosis. He could not put his finger on a cause or remedy at the time. I guess what I am looking for is someone who can help figure this out. I understand that no one may ever be able to figure it out. I saw a video of a neurologist in Austin Texas who i was very impressed with only to learn that their clinic only treats people who are Texas residents. Do the Mayo Clinic have any part of their clinic that would specialize in diagnosing causes of SFPN ? Thank very much for responding.