New member with idiopathic neuropathy
 

Hi all. I'm a new member and have been diagnosed with idiopathic (cause unknown) small fiber neuropathy. It came on suddenly 4 months ago. I have severe nerve pain that comes and goes in feet, lower legs, hands and forearms; as well as a lesser nerve pain that comes and goes over the trunk of my body. I've lost some sensation of touch over the majority of my body. A long list of blood tests have been done (all negative); the glucose tolerance test was negative for diabetes. The only test that came out positive was the one for nerve damage. There's no muscle damage at this time. I've seen 2 neurologists - both tell me to learn to live with the condition, and get thru each day with pain pills. I'm 53 years old, so that's a lot of pain pills in my future! I've concluded that if answers aren't obvious, doctors prescribe meds. So I'm doing the research on my own, and in the near future I'm trying to rule out celiac disease and mercury poisoning. I'm also having hair analysis done - if anyone can recommend a hair analysis lab that they trust, I'd appreciate that info. Any other thoughts or directions to go would be appreciated. I'm a newbie at this research effort, but do believe the answer is out there. So your thoughts are greatly welcomed.

Welcome doxey!
 

Scroll down the menu of topic boards and you'll find the Peripheral Neuropathy one. Read the threads at the top called 'Stickies' --Useful info to 'stick' at the top. I bet you will find lots of useful info there and good people.

If you suspect mercury poisoning, can I ask if you have had a 24 hour urine test? I do know hair analysis is at times 'iffy' in the results and the quality of testing....is why I ask.

See you there! - j

Welcome, doxey! I can really sympathize with your struggle to find a diagnosis, and your refusal to accept the "go home and live with it" idea. Good luck on your research. There are a lot of really experienced and caring people in the NT community. I hope you will find some insight to help you. If nothing else, you will find sympathy, since so many of us live with pain.
Hugs,

New member too, sort of
 

Hi Loisba
I used to be a member when this forum was on a different site then I got lost, and then couldn't log in and then, I gave up....for some reason, today, I got logged in, but have been baptized with a new screen name...darn, I just forgot my new password though....maybe I will remember it later. I had to laugh as some one on this forum was talking about being run over by some trail riding cyclist....I need to tell her, we do see pedestrians...it is what is in back of us that is a problem.

I have 'idiopathic' small fiber neuropathy, and I do not believe anything is 'idiopathic'....my name for it is idiotpathic...I think the cause simply has not been discovered yet or some one missed the cause. Idiopathic may be 'cheap' for the doctor not wanting to do genetic testing, (as in my case) or it can be cheap for 'not running every test'.

There does come a point however, when we have to accept the limits of medical science and live with the darn condition. I have good days such as today, when I just polished off a kick butt 2 hour bike ride....and then I have bad weeks, when I don't move much from the bed because I literally can not stand up. I ache, burn, get numb, feel like I have a bike pedal stuck to the bottom of my foot, get severe heaches until I puke, have bradycardia with pulses so low I go into idioventricular rhythms, BPs so low or high that they scare the hell out of other medical personnel, I have numb or painful fingers and hands...oh and I have gastroparesis...sometimes, unless I decide to exercise, and then my system decides to do an 'all clear' prior to my going to work out. Then my stomach shuts down for the entire time I work out, even water burps back up...I have intractable insomnia and restless leg syndrome (all over). I have sensory and autonomic neuropathy and life is one constant rehab....but I do it functionally, that is I make 'rehab' part of my every day life as much as I can....that makes it less boring. I even ride my bike thru a completely black tunnel on the trail, no lights to train my sensory system...Ok, so I do it slow. Some days, taking a bath is 'functional rehab'. I have developed a whole new vocabulary and some of it isn't nice.


I am 54, close to your age, female. I have to 'manage' this condition, until I get some doctor to look into the latest data I just sent him or I find some clinical trial I think is worth going thru, just to have a chance at a better life. The problem with small fiber neuropathy is it is a symptom, not a disease.

I have had IVIG-no improvement. I had 16 weeks of IV methylprednisolone (I will never take another steroid) It has taken me 18 months to rebuild the muscle I lost).

I am an RN and a Clinical Exercise Specialist, and former, but not lost, sprint triathlete, but that doesn't exempt me from the struggles that every one else has, that posts on here.

Like I said, I just got back from a great bike ride thru woods and wetlands...and it was a good day to die, or hey, live---even with this crappy condition, and I couldn't have picked a nicer trail to live or die on...That has been the only way I can live life, one day, at a time. I have had to focus on living up to my potential, whatever that potential happens to be on any given day....and honestly, it is very hard to get medical help to do that.

Perhaps some of the medications out there will help you...most don't help me and a few have led to very serious side effects and consequences due to my autonomic neuropathy. You have to find what works for you....and we are all different. That is a good thing!

welcome doxie and cyclelops

here is the link to our PN Forum http://neurotalk.psychcentral.com/forumdisplay.php?f=20