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Neuropathy: Numbness only, no pain

Neuropathy | Last Active: 2 days ago | Replies (508)

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@athenalee

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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Replies to "I had discomfort in my feet for a number of years. Numbness on the bottom, stiff,..."

@athenalee, I regret it took so long for you to receive the proper diagnosis. While it is good news indeed that you eventually received the liver transplant, a delay in ordering tests/scans or mis-diagnosing a condition can create serious complications later on for the patient.

My 1st cardiologist of several years brushed off my numb/cold feet as some form of arthritis. A new cardio referred me to a neurologist and along with the quick p.n. diagnosis and due to his diabetes testing, I was diagnosed with pre-diabetes. My pcp had not mentioned that my A1c had been reaching consistently higher numbers over three years and I hadn't yet started researching how to interpret lab scores.

Last week, I saw a new nephrologist and learned more in that one visit with him than with several unhelpful visits with the previous doc.

I couldn't agree with you more that despite any reluctance some of us face in making a change in docs, it is well worth the risk and can make a great difference in treating our chronic health issues.

Thanks to you and others who make this such a worthwhile forum for learning and sharing!