.

General Topics

Moderators: JohnV, Arron, garym

.

Postby Buzznerd123 on April 15th, 2015, 2:02 pm

.
Last edited by Buzznerd123 on May 1st, 2016, 12:03 pm, edited 1 time in total.
User avatar
Buzznerd123
Selfless giver of time
Selfless giver of time
 
Posts: 114
Joined: January 5th, 2014, 2:37 pm

Re: Followup for my small fiber neuropathy workup

Postby leaflea on April 15th, 2015, 7:45 pm

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.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
User avatar
leaflea
Saint
Saint
 
Posts: 525
Joined: November 12th, 2013, 2:06 pm
Location: Minneapolis, MN

Re: Followup for my small fiber neuropathy workup

Postby Ghayes420 on April 15th, 2015, 8:14 pm

Thanks for posting your results Buzz. I guess I won't have much hope for a polyneuropathy dx later this month. Oh well. :(
A very proud fasciculator since 8/14/2011. :)
User avatar
Ghayes420
Hero
Hero
 
Posts: 464
Joined: August 29th, 2011, 9:00 pm
Location: Nor Cal

Re: Followup for my small fiber neuropathy workup

Postby Buzznerd123 on April 17th, 2015, 8:50 am

.
Last edited by Buzznerd123 on May 1st, 2016, 12:03 pm, edited 1 time in total.
User avatar
Buzznerd123
Selfless giver of time
Selfless giver of time
 
Posts: 114
Joined: January 5th, 2014, 2:37 pm

Re: Followup for my small fiber neuropathy workup

Postby Scboy on April 17th, 2015, 3:15 pm

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.
Scboy
Selfless giver of time
Selfless giver of time
 
Posts: 137
Joined: December 30th, 2013, 7:27 pm

Re: Followup for my small fiber neuropathy workup

Postby Buzznerd123 on April 20th, 2015, 6:26 am

.
Last edited by Buzznerd123 on May 1st, 2016, 12:03 pm, edited 1 time in total.
User avatar
Buzznerd123
Selfless giver of time
Selfless giver of time
 
Posts: 114
Joined: January 5th, 2014, 2:37 pm

Re: Followup for my small fiber neuropathy workup

Postby BFSBurger on April 24th, 2015, 8:40 pm

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-
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
User avatar
BFSBurger
Saint
Saint
 
Posts: 852
Joined: October 3rd, 2012, 10:19 am

Re: Followup for my small fiber neuropathy workup

Postby Buzznerd123 on April 29th, 2015, 12:22 pm

.
Last edited by Buzznerd123 on May 1st, 2016, 12:03 pm, edited 1 time in total.
User avatar
Buzznerd123
Selfless giver of time
Selfless giver of time
 
Posts: 114
Joined: January 5th, 2014, 2:37 pm

Re: Followup for my small fiber neuropathy workup

Postby Ghayes420 on April 29th, 2015, 1:45 pm

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.
A very proud fasciculator since 8/14/2011. :)
User avatar
Ghayes420
Hero
Hero
 
Posts: 464
Joined: August 29th, 2011, 9:00 pm
Location: Nor Cal

Re: Followup for my small fiber neuropathy workup

Sponsor

Sponsor
 


Return to General Topics

Who is online

Users browsing this forum: Bing [Bot], Google [Bot] and 3 guests