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Will, glad to hear from you, but wish you were having a better time of it. As always, I send many caring thoughts your way.

Help4mywife, I was wondering what tests your wife has had to determine that she has SFN? Has she had a skin biopsy to definitely determine she has SFN? SFN doesn't show up on nerve conduction tests so often baffles neurologists. Without a skin biopsy, which isn't always conclusive, a doctor is giving an SFN diagnosis strictly based on symptoms. Actually my neuro didn't do a skin biopsy because my symptoms are so classic SFN and he ruled out any other conditions, including amyloidosis. You say your wife has symptoms that aren't commonly seen in SFN. Even though she has been to Mayo, that doesn't mean the doctors there couldn't have missed something. Or on the other hand, perhaps the other symptoms are anxiety/depression related, but that doesn't mean she doesn't have SFN too.

Regarding amyloidosis, she can ask for the test to put her mind at ease. My doctor just automatically tested for this as it was a significant possibility with SFN--the test was negative.

Believe me, anyone with SFN needs all the support they can get to ease their mind. Actually my neuro thought I was a whacko in the beginning because he sees SFN so rarely. It was very hard not to be taken seriously when I was scared silly. I can fully understand why your wife would react so strongly to any suggestion that her symptoms were the result of anxiety/depression.

As to ideopathic, that just means medical science hasn't discovered the cause. There are many cases, like mine, where no cause can be found, but we sure do have SFN. I turned 65 two months before I noticed symptoms and went to the doctor to finally be diagnosed with SFN. At 65 I had thought I was the healthiest person on the planet--no previous serious illnesses, medical conditions, anxiety or depression--then the SFN came out of nowhere.

Is your wife taking any meds for her symptoms? Although many people, like Will, have only moderate success with pain control, others like myself have been luckier and found the right combo of drugs so that we are pretty much pain free most of the time. At least for now my meds (Cymbalta and Gabapentin) work well, but that, like other things with SFN, can also change.

Good luck to you and your wife and hugs to all with SFN out there. - Ruby





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