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

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@maryflorida

I agree. They don't ask about me because it has been ten years of pain. They always ask about my husband who is really sick. He had a kidney transplant in 2018 at Mayo and then the next year he was in six hospitals within six weeks with severe infections. He is still sick, but I take good care of him and pray that God does not take him from me. So, we have each other (meaning we on this site) and we do care for each other. You are not alone.

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Replies to "I agree. They don't ask about me because it has been ten years of pain. They..."

@maryflorida

I'm blessed by having the support of the many people here, as well. I don't interact every day because some days are too full, while others days find me more depressed. But even on hard days it can be helpful just to read through the various conversations.

I'm a little curious about your use of the phrase, you pray "that God won't take him from me." Is that just a way of saying that you don't want to see your husband die? Or do you actually believe that when he dies, it's God's doing. God will take him away from you. It's more than dying from cancer.

I don't want to comment about your use of that phrase because I would like to understand what lies behind the words.

Have you made any progress toward being tested specifically for neuropathy? Most tests are fairly painless, with maybe a couple of exceptions. Testing has told me several things about what I'm experiencing. The first one, a nerve conduction, showed that I have neuropathy, but that's not very specific. I understand that there are lots of types of neuropathy. By now, I know that I have idiopathic neuropathy, that it affects both sides, so I have idiopathic polyneuropathy. Then I learned that it's small fiber, and that there's a marker for it in my genes. So, it all adds up to idiopathic inherited small fiber polyneuropathy. Quite a mouthful. I'm also showing signs of autonomic neuropathy. I ask the doctors if what they see could be neuropathy related, and the answer is always the same. "Maybe." Whether it's double vision, tinnitus, esophageal dysmotility, reflux, urinary, ED, bowel, balance. It's always Maybe. Or Could Be. So, testing has helped me a lot in terms of why certain things are happening to me, and what other things might possibly be in my future.

One thing I do know for sure about my future is that I'm going to say goodnight, have our devotions, put on my Bipap mask and sleep for 9 or 10 hours.

Have a peaceful weekend.

Jim