[Liftyourhands7]

I had my second appt. With UCLA yesterday, I have decided to be treated at the University because I seem to be a very difficult case. I love my Neuro Doc, she is patient and kind and has seen many people with my type of neuropathy, ( head to toe), but admittedly says this type is hard to pin point, she is sending me to the rheumy dept at the hospital because 2 years ago I tested positive on my SCL70 tests but after going to their rheumy dept at that time, they determined that my test was a false positive, I was tested again in Oct of this year and I tested negative for SCL70 antibodies. My Neuro Doc at UCLA decided to check those antibodies again and took blood yesterday again to check for this, sure am hoping I come out negative again I will have to wait a few more days to find that out. She also informed me that small fiber neuropathy can turn to large fiber, that's not good news, but as for now I do not have large fiber, Praise God! I will be having my third EMG in 2 weeks, I hope it will be negative. My Neuro Doc also said that if this was caused by a virus, she has seen many full body neuropathies resolve when caused by a virus. She also does not agree totally with my last neuro Doc, she says for now she will not treat with Ivig or steroids, she said both these treatments have many side affects of their own and again if my neuropathy is caused by a virus then in time it has a good chance of resolving, of course I hope and pray this will be the outcome, in the meantime I wait, it's so hard to not have a label on all this. Thanks my friends here for always giving so much encouragement. Love and hugs, Jan

[NeuroLogic]

I have head-to-toe peripheral neuropathy, too. I have burning feet often and occasionally burning scalp, which is the worst. My left hand and thumb used to burn often, too. I'd have to run it under water to cool it down. I can't even put my hands together for more than about a second without feeling burning.

But I haven't seen any doctors yet or done any testing. I live sort of in the middle of nowhere, so I'm trying to figure everything out by reading posts in this forum and other websites.

PN is a real test of persistence. It took me years of searching to find out what the problem was, so I'm kind of prepared for a slow road to full recovery. Instead of getting a complete answer instantly, it's more like hoping for one small piece of a big puzzle after each search.

Along the way I've bumped into medical info (e.g., on Mg, Ca, COQ10, wheat, sugar, insomnia, etc.) that I probably never would have read if I didn't have PN.

It's good to know viral PN can be resolved in reasonably good time. Thanks for that info.

[mrsD]

This test explained:

http://labtestsonline.org/understand...s/ana/tab/test

Also I wonder if you could see if you had further tests, or can get tested for MGUS..
http://emedicine.medscape.com/article/204297-overview
you can join to view this if they block you.


http://www.mayomedicallaboratories.c...gus/index.html

We've had MGUS patients here. Most have had neuropathy symptoms.

[cyclelops]

OMG, I get so frustrated with the false positive stuff from rheums. First they tell you that you are negative, so you are fine. Then your ANA gets positive, but your ENA isn't, so you are fine. Then when you get a positive ENA, it is always a false positive and you are fine. What do rheumatologists really do for a living besides tell people they don't have autoimmune disease??

If you had a positive SCL70, I would seriously find some one who knows something about scleroderma, and scleroderma sine. If I had a +SCL70, I would clamp my jaws on the doctors backside and not let go until I had an answer.

Aaargh, on that note, I am going to bed....growl, harrumph....doctors.....