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Old 05-03-2013, 05:07 PM
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Join Date: May 2013
Location: Texas - DFW
Posts: 4
10 yr Member
why? why? is offline
New Member
 
Join Date: May 2013
Location: Texas - DFW
Posts: 4
10 yr Member
Default sfn and IVIG treatments

I have sfn also. Do you know much about IVIG for SFN?


Quote:
Originally Posted by Joe Duffer View Post
Hello folks… I’m a 67 year old guy living in the great northwest (Portland, OR area). I’ve suffered from pretty sore feet for 7 years. After extensive testing (including skin punch biopsy), I was recently diagnosed with Idiopathic Small Fiber Peripheral Neuropathy. I was basically told the disease was incurable and that pain management (drugs) was the only help they could provide. I was given a prescription for Gabapentin (Neurontin), with 1200mg x 3 per day being the upper limit. I was instructed I could ramp-up the dosage to find the level I needed.

Besides gaining 25lbs in two months and feeling sedated, I also didn’t feel any perceptible pain relief, and decided to quit. I was up to 2700mg per day when I quit, and was actually told by my neurologist that I could “cold turkey” Gabapentin if I choose. What followed was comparable to coming off a bad acid trip in the 60’s (not that I ever did that)… it felt like every nerve fiber in my body was “firing off” at the same time. Thinking I was going to die, I relented and took my normal dosage and began feeling better.

That’s when I began searching the internet for info regarding Gabapentin and SFPN. Finding and then spending a good bit of time on this forum, it seemed clear I didn't need to look elsewhere. Amazing wealth of information and an even more amazing group of people.

Anyway, I began to slowly wean myself off Gabapentin and am currently down to 300mg x 3 per day. However, at each new lower dosage, I felt nerve activity in my body I had never felt before taking Gabapentin. It’s like this drug can actually bring on neuropathy symptoms. I don't think I want to go lower as symptoms seem to become more acute even after a 100mg lower dose.

I've probably gone on long enough for a first post, so let me ask a question:
Can anyone recommend a neurologist, preferably a specialist in SFPN or PN, in the Portland, OR area? Seattle isn't out of the question…

BTW, my name is actually Jack… “Joe Duffer” is the name I've used on the many golf forums I hang out on. This name reflects my skill level.

Cheers,
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