Quote:
Originally Posted by CoachT
It does help NYCGirl. $10,000 is a lot of money to find out that it is idiopathic, but I bet I have spent close to that as well. It is very scary to not understand what is happening. You can't help but wonder where it is going. I hope mine lets up a bit soon or I think I will lose my mind. It was a great let down to have my doctor tell me that he doesn't expect it to worsen and within days have it do just that. He said that most cases of idiopathic sfn reaches a plateau within the first two years. What have you been told as for the likely progress of this condition?
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but I was told very little. Since I live in nyc I was fortunate to have access to
one of the top peripheral neuropathy neurologists at cornell. He seemed skeptical in our visits that I had neuropathy. He shared the biopsy results with me over the phone a couple of weeks later and said "yup, you have sfn" I said, and...??? He said, we don't know what is causing it. I quickly realized that this was going to be a matter of symptom management. I was a little discouraged that he didn't have anything to offer. I also got a little down and scared reading this forum.
I have read that idiopathic neuropathy usually doesn't disable and doesn't progress to motor neuropathy. The most important thing is for me to manage the painful flares. Some things that have helped me are:[LIST=1][*]sharing with others-it has been a relief to tell my family, some friends and coworkers. it doesn't seem so bad when you tell others[*]exercising and eating well[*]I find working and socializing can distract from the pain[*]Thanks to Mrs. D, I got turned on to the Magnesium lotion which I feel helps. I keep a bottle in my office and at home.[*]I also know I will try medication when and if the pain gets too severe[*]I am hopeful that as the years go by there will be additional breakthroughs as to what causes this and treatment options
Hang in there coach.