Thanks for all your replies I sure appreciate all of you. I just got back from UCLA Medical and saw one of there top Neuro Docs, she was very kind and spent so much time with me, I have to tell you she was not impressed with my skin biopsy, she said that test is fairly new and has not proven to be all that accurate, she believes that I may have an autoimmune disease and is testing me accordingly, she also from all my tests and information says that this neuropathy may have been caused by a viral infection, but I do not have CIDP because my EMG'S are all clean. She is going to write a full report on my visit today and I will let you all know what it says, she wants me to change one of my medications,gabapentin, to cymbalta she said it works better than gabapentin, she also suggested acupuncture and rlypoic acid. Any thoughts are appreciated. Thanks, Jan

This is our recent discussion on r-lipoic acid.

http://neurotalk.psychcentral.com/thread159210.html

Select the "stabilized" form when you purchase it.
Many of us use Doctor's Best brand, found on the net.
iherb.com and some others. Look for "stabilized" on the bottle, as this form is the most absorbed and effective.

This sounds exactly what I have been through. I had the skin biopsy and was told I had small fiber neuropathy. Went to Hopkins they said no even though my results said yes. They think Sjogrens even though all of my test were negative. The Schmir's (eye test) was positive. I wonder though if that could be medication induced. Back to Pennsylvania neurologist (who by the way said his mother tested neg for it for 10 years and just tested positive). He sent me to Rheum who is not sure but said not only do I have SFN but I have fibro (I don't believe that). Now I am back to neuro who wants to do another EMG due to finding a change in my leg strenght. He is also considering a muscle biopsy. (unsure why). Him I trust has not steered me wrong once. He found my SFN in a few short months. I hear others wait many years.
I understand your confusion. I did find the lip biopsy to be painful after the novacaine wore off but it tolerable. AI appear to be a lot like you in my need for an answer to this but I ccam coming to realize that I have been tested for just about anything and the only thing found was SFN. They also say it is idiopathic and autoimmune probably from a virus.
My family doctor just told me two days ago that as far as medicine has come they are still stupid when it comes to Auto immuse diseases.
I will continue to look if I see something that might be related to me I will bring it to my neuro's attention. For now I am trying to focus on feeling better.
I do see an accupressurist and she helps a lot. If you are willling give it a try.
I also have been trying meditation and I believe it lowers my stress from the pain. I t took me a while to get to this point> I have had this for three and 1/2 yars. I hope this helps and makes sense. I am trying to do it quickly. My lunch just ended. Hang in there!

Thanks ladies for your responses MrsD I will get the rlypoic from the place you recommended, hopeful we do sound so much alike, what meds do you take if you don't mind me asking. And what symptoms do you have? Are you numb from head to toe like me? In what way does the accupuntre help? I also have heart palps, do you have that as well? Thanks for answers to my questions I really appreciate it. Jan

Hi Jan, I take Cymbalta which was just raised to 90mg. I know some people do not like this but it has worked well for me. I will tell you that when I first started it my symptoms seemed to incrrease but once by system adjusted to the med it clamed down. I also take synthyroid because I have hypothyroid. I take I take Plaqunil 200mg at night. I also take Tramodal for the pain on a as needed basis. I also take B12 every morning.
Currently, my neuro does not want me to add any more supplements. He wants to do more testing and said he does not want me to muddy the waters.

I do have neuropathy from head to toe. The only area that is spared is the left side of my face. It does seem to be creeping across my nose though. The accupressure seems to aleve my symptoms a little and believe it on not it lifts my spirits some. Accupressure is different fomr accupuncture. NO needles it is shiatsu. Done with the hands on trigger spots.

I hear your frustation. I go through it a lot too. Today I seem to be in a good place but did wake up in a lot of pain this morning. The best advice I can give to anyone with this, is to keep yourself active to your limit. Keep your mind occupied. Give yourself a break once in a while. I have begun to realize that I can't be super anything anymore. I can only do the best I can. I hoope this helps you. Try to find something that reduces your stress(I know that is easier said then done) butI do find that stress raises my pain level significantly. Hope this helps, hopeful

Jan, you are going to want to start slowly with the R-lipoic.

Perhaps take it every other day for a week or so, until you think you can handle it daily. (this would be the 100mg) and take it in the morning.

It may lower blood sugars, and if you have palpitations, it might aggravate that also. I started at 50mg a day... back when.
And I cannot really tolerate more than 100mg a day now.

A couple of posters here have had the same experience, but the majority don't seem to have a problem with it at all.

So just go slowly in the beginning.

it is just so confusing i have been told so many things in these few years i don't know what to think anymore
this post just is one of many i hear (makes one wonder)
i pray someone gets to the bottom and you can
get the treatment you need to feel better
sending good thoughts

eva

Thank you all for your suggestions, MrsD I will start off slowly, I might even start with 50mg per day my heart palps are a little worse right now so I'm really afraid to start something that might make it worse. I am starting to feel numbness not only in my face but now in both eyes and even in my mouth, this is all so hard, I am wondering if this can ever get better, I wish I had some sort of label so I can know how to treat this, how can this get so bad so fast! I just pray I can find an answer one day, and hope that day comes soon. Blessings, Jan

FWIW, I tried going from 100 mg to 200 mg. I experienced no problems whatsoever, but there were no appreciable benefits by raising the dose either, so on that basis (and additional cost) I dropped back down to 100 mg without incident. In my mind this just supports that:
1. Everyone's sensitivity/response to RLA is different, and
2. More isn't necessarily better.

I do wish it worked for everyone as well (and as quickly) as it has worked for me; IMO it was the turning point.

I have since experienced additional benefit when I added pantothenic acid (B5), verified by stopping & starting it again. What I get from this is, if the RLA doesn't seem to help any, I'd try adding B5 before abandoning it altogether (I don't know of any evidence that B5 alone would help unless one were deficient in it, which would be possible, but unlikely/rare).

Best wishes,

Doc