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Had Skin Biopsy at Duke

PostPosted: February 7th, 2015, 9:00 am
by Scboy
Well in my last appointment they did a skin biopsy. Dr says I likely have small fiber neuropathy based on his observation and he expects the biopsy results will confirm. I've already had all the diagnostic tests done so if the biopsy comes back positive he says it will be idiopathic. The only question is whether it's length dependent or non-length dependent. He said my symptoms point towards non-length dependence. The biopsy will be able to tell cause they took distal samples and proximal samples. Interesting he said idiopathic neuropathys generally run a course of about five years then improve to some degree but usually not completely. The important thing is to minimize nerve damage as much as possible during this time. Diet, relaxation and moderate exercise are all very well important. He said it's probably autoimmune related.
He told me to take 400mg a day of Alpha Lipoic Acid. He said studies had shown that it protects the nerves in neuropathys.
He will discuss other treatment possibilities in my next appointment next month after we get the biopsy results.

Re: Had Skin Biopsy at Duke

PostPosted: February 7th, 2015, 11:25 pm
by leaflea
Scoby, thank you for this information. I think we would all probably do well to start the acid! Please keep us posted on your results. Interesting indeed in light of Buzznerd's recent posting on this.

Re: Had Skin Biopsy at Duke

PostPosted: February 20th, 2015, 9:56 pm
by Scboy
Biopsy negative. Great now what? What could possibly be causing paresthesia and twitching all over? Really frustrated. The Alpha Lipoic Acid does help some.

Re: Had Skin Biopsy at Duke

PostPosted: February 20th, 2015, 10:21 pm
by Ghayes420
Thanks for sharing. I was hoping it was positive. Now you are with the rest of us. Just plain ol' BFS with now *beep* causation and we most likely will never find one.

Re: Had Skin Biopsy at Duke

PostPosted: February 22nd, 2015, 10:54 am
by Scboy
I guess now my fear is if the neuropathic pain all over is not from the small fibers then where is it coming from? The brain? That opens up a whole list of fears. Parkinson's syndroms among them. I just don't see widespread pain and some autonomic dysfuction like I have as a symptom of BFS.

Re: Had Skin Biopsy at Duke

PostPosted: February 22nd, 2015, 5:23 pm
by German2
Dear Scoby, I also have neuropathic pain. In my case not the small but definitely the long fibers are concerned (double sided ulnar nerve syndrom, meralgia paresthetica - the latter recovered luckily almost completely after about a year but was so painful in the beginning that I could not walk for weeks). But I also do not have a confirmed polineuropathy...I am asking the same question. Why do I have the pain...I am taking this Alpha Lippon Acid 600 mg since about a year now. I cannot say if it has helped...I don't know what would have happened without it...I just proceed with it.

After a final visit at a renowed neuromuscular specialist who had just one further idea to check out I decided to give the alternative medicine a chance...I think some people here already tried a therapy towards mitochondrial dysfunction. It is well known for causing trouble on a neuromuscular base...For me it is worth a try..I just want to give you a further idea.

Re: Had Skin Biopsy at Duke

PostPosted: February 23rd, 2015, 6:05 am
by misterjuanperalta
Actually 600mg of ALA per day is what was proven to work. It's in NIH website.

Re: Had Skin Biopsy at Duke

PostPosted: February 27th, 2015, 4:21 pm
by Scboy
Sweat gland density test just came back abnormal on the calf! Report says consistent with small fiber neuropathy. Thigh was normal. Haven't had a chance to talk to Dr yet. Not exactly sure what this means and where I go from here. A little freaked out by this as I wasn't expecting the second test results.

Re: Had Skin Biopsy at Duke

PostPosted: February 27th, 2015, 8:34 pm
by misterjuanperalta
I've read it's associated with twitching. I spoke to a person who has it and twitching.

Re: Had Skin Biopsy at Duke

PostPosted: March 3rd, 2015, 12:32 pm
by Buzznerd123
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Re: Had Skin Biopsy at Duke

PostPosted: March 3rd, 2015, 6:25 pm
by Ghayes420
I find the prospect of them finding SFN on me intriguing. I am scheduling a visit to a top neurologist at Washington University in St. Louis with the goal of them finding and possibly dx'ing SFN. Even though I still struggle with fears on occasion, I have no further investigation for ALS warranted at this time.
However I do get the burning sensations on various parts of my body as well. I do get some long fiber neuropathy as well (currently sural neuritis of unknown etiology) so that makes me questionable a bit at times. I will let you know. Thank you Scboy and Buzznerd for bringing this possibility to light for many of us.
-Greg

Re: Had Skin Biopsy at Duke

PostPosted: March 3rd, 2015, 7:36 pm
by Scboy
I still haven't heard from Dr yet on the next step. The nurse said he may be consulting with another dr on my case. The good thing about Duke is the Drs work in teams.
The R-Alpha Lipoic Acid really has helped me with the pain. I ran out and didn't take it for a day Iand the pain started coming back. I hope this may be a clue as to the mechanism behind all this.

I have neuropathic pain but the sensory biopsy test came back normal. Just the autonomic fibers in the sweat gland test came back abnormal. I obviously don't understand how all this is connected. I plan to ask the dr.

Re: Had Skin Biopsy at Duke

PostPosted: March 4th, 2015, 8:07 am
by Buzznerd123
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Re: Had Skin Biopsy at Duke

PostPosted: March 4th, 2015, 9:49 am
by Scboy
I may be mistaken then about the motor small fibers. The dr said you can twitch with small fiber neuropathy and I assumed that meant there were small fiber motor nerves. That may not be the case though. Could be some other reason for twitching. Of course I'm not a doctor so my assumptions can be misguided.

Re: Had Skin Biopsy at Duke

PostPosted: March 4th, 2015, 11:08 am
by Buzznerd123
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