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PostPosted: April 15th, 2015, 2:02 pm
by Buzznerd123
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Re: Followup for my small fiber neuropathy workup

PostPosted: April 15th, 2015, 7:45 pm
by leaflea
Yes, Buzznerd, we are special. Clinically, my doctor at Mayo thought I certainly had some kind of autoimmune thing or connective tissue problem - all tests came back normal. We all have weird stuff not detectable by their tests. The stocking/glove peripheral neuropathy that manifests in different ways amongst us does not always show on EMG. My EMG was ordered for that, not for any suspicion of NMD, and it was negative. Some have pain, some have cold feet and hands - its always interesting to read about our various similarities.

Re: Followup for my small fiber neuropathy workup

PostPosted: April 15th, 2015, 8:14 pm
by Ghayes420
Thanks for posting your results Buzz. I guess I won't have much hope for a polyneuropathy dx later this month. Oh well. :(

Re: Followup for my small fiber neuropathy workup

PostPosted: April 17th, 2015, 8:50 am
by Buzznerd123
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Re: Followup for my small fiber neuropathy workup

PostPosted: April 17th, 2015, 3:15 pm
by Scboy
Wow. I'm shocked. You have pretty much the same symptoms as me. My sensory skin biopsy was normal proximal and distal. My sweat gland autonomic proximal was normal. Only my distal sweat gland was "mildly" abnormal. Dr at Duke said its idiopathic and just wait a few years and hope for the best that it will probably get better.

Re: Followup for my small fiber neuropathy workup

PostPosted: April 20th, 2015, 6:26 am
by Buzznerd123
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Re: Followup for my small fiber neuropathy workup

PostPosted: April 24th, 2015, 8:40 pm
by BFSBurger
Buzznerd123 wrote:@ghayes

I think it's better to not having it proven, if it's proven there is damage which might or might not be reversible.
No evidence means in my view that maybe this is reversible somehow.


Exactly. Why borrow trouble? Why do we want bad diagnoses so badly here?

BFS has always masqueraded as countless serious conditions. And tests always seem to come back normal. Would you rather have one of those conditions, or just have some strange syndrome that is harmless?

We constantly get reminded that absolutely NOTHING is wrong with us that matches any serious conditions. Yet we ignore it and keep hoping to find one anyway.

Find your triggers and avoid them. Once you can establish cause and effect with BFS, you start to gain control over the situation, and you can begin to steer the overall situation in your favor. At least that has been my experience.

-B-

Re: Followup for my small fiber neuropathy workup

PostPosted: April 29th, 2015, 12:22 pm
by Buzznerd123
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Re: Followup for my small fiber neuropathy workup

PostPosted: April 29th, 2015, 1:45 pm
by Ghayes420
Buzznerd123 wrote:@BFSburger

There's a flip side to not having anything proven with subjective symptoms being present, loss of credibility ...
It's hard to justify something that is not objective, invisible illness ...



Abso-frickin'-lutely. Amen.