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Not SFN After All
Jan 23, 2014
I'm posting this rather long tale in hopes it will encourage others who are having trouble getting an accurate diagnosis and also to encourage all to seek out the most thoroughly trained neurologist and be proactive in seeking expert help.

Five years ago I started losing feeling in my hands and feet, and after a gazillion tests, was told by the neurologist that I had small fiber neuropathy (SFN). He never did a nerve biopsy to confirm the diagnosis because he said the nerve fibers could be something like compressed, thickened, or whatever due to my age and the test wouldn't be definitive. He said it was SFN because he had ruled out any other possibility for my symptoms. I often wondered over the years why I didn't have the extreme pain like those who post on this board; I thought the Cymbalta and Gabapentin I took just worked well for me. My numbness continued to progress.

Last summer a new neuro took over the practice, and my primary care doctor suggested I see the neuro to see if he could shed any more light on my condition. This second neuro said I had diabetic neuropathy because my A1C test had moved into the prediabetic range (barely). While I was there, he did a Babinsky test, which I failed, thus indicating I had central nervous system damage. A week later I had MRIs of my brain and neck, and the following day I received a call from the neuro instructing me to go immediately to the hospital ER as I was in danger of becoming a quadriplegic at any time.

Bottom line is I had a huge tumor that was twisted around and flattening my cervical spine. I was admitted to the hospital and within a few days had a very high risk surgery to remove the benign tumor. I survived the surgery, obviously, and miraculously with only a little collateral damage, right arm is more numb. I was told the tumor may have been growing for decades.

Following the surgery, neuro #2 continued to say I had diabetic neuropathy, but he referred me to a neuro-muscular specialist at a teaching university.

This neuro was fabulous and explained that I couldn't have SFN because I didn't have the signature burning pain and that because when I first was diagnosed 5 years ago I wasn't prediabetic, then I didn't have diabetic neuropathy. He feels that the tumor was the sole cause of my neurological problems. While I may not regain the sensory feeling I have lost, it is a huge relief to know that I don't have a neurological condition that will progress further. Sure wish neuro #1 had got it right in the first place before the extensive loss of feeling.

Hope this helps someone. Hugs, Ruby

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