Canagirl: You joined the forum here a short time before I did. I've been following your story pretty regularly. It breaks my heart because I can feel your desperation. I feel fortunate that my problems are only a fraction of what you are facing.

I don't think any of us here really know what the future holds for us. But you've read enough posts to know that many people improve over time, or have symptoms that wax and wane. Others have continued to get worse, but still find ways to enjoy life.

The doctors tend to say there is nothing that can be done other than treat the symptoms. But the more posts I read, the more it becomes apparent that the people who have improved generally believe that four things have contributed: diet, exercise, supplements, and stress reduction.

So, I've chosen to go down that path. Doing the supplements is easy (as long as you can afford them). Diet and exercise takes a little more commitment, but they certainly are do-able. Stress reduction is the tough one. It's hard to stay calm when your life is going to @#$%^! But everybody can find a way. For me, I put the headphones on and listen to various "sounds of nature" - ocean waves, waterfalls, rainstorms etc. Others do meditation, etc. Find out what helps you remain calm and go with it.

I don't know for sure if any of what I'm doing will actually help or not. But I'm going to fight as hard as I can. For me, the worst thing would be to end up in horrible shape some day - and knowing that I could have done something that might have helped.

I have to ask: What is the doctors plan now that you have a positive skin biopsy? Are they just going to continue adding more and more meds to deal with your discomfort, or will they take a more proactive approach and try to once again find the cause of this and address that?

I completely understand the need for comfort and don't want you to think I disagree with increasing your Gabapentin until you have better relief. But NOW you have something to show for your pain and discomfort and the doctors (I feel) have an obligation to pursue the root cause of this in order to give you the BEST chance at healing.

Even if they still feel it's idiopathic, they may be able to get you a trial of steroids (to rule out inflammatory), or even IVIG. Now that you have had the skin biopsy, the test can be repeated after treatment trials...to see if the treatment is working. And since they have documented the positive biopsy, they SHOULD be paying for subsequent biopsies. This is one of the best parts of the skin biopsy...you can repeat it and SEE if the nerve density is increasing (even slightly), which would tell you if a treatment is working and 'healing' is even possible. I would suggest though that you use a pathologist that checks morphology (condition of the fibers) so you can also see if these improve also.

But like others have said, everyone is different and whether your nerves will heal is completely unknown at this point. You would have to know what the root cause is and whether or not there is an appropriate treatment for such cause.

There is NO reason to not go ahead and follow a good diet, avoid triggers and use supplements to help in this process. Anything and everything that may help should be considered...even if it's just to give you a small edge in beating this.

I don't know what the docs plan is. This is out of my pcp's league. He is great though. Friday night after my diagnosis he went home and researched all night for treatments, trials, supplements etc. then met me at his office on sat ( his day off) and shared what he found so far ( not much, and nithing I didnt already know). Basically, best meds, some supplements, no cure, need to find a cause etc. but he will keep looking all week and meet with me next week again. He deferred any further testing to my neuro but she's away until end of June. He will be placing an urgent call into her when she returns to talk about testung and to make sure she takes me asap

He sounds very attentive and caring, canagirl. You're very fortunate.

Isn't it dangerous to try steroids if it is bacterial or viral? I am curious about this because I am on the fence with which route to take first. My neuro recommends a round of steroids after the wait and see approach.

I tried the medrol pack in September though, and by night 2 I was shaking like crazy with a burning stomach and up for 72 hrs, so they said to go off. I don't know what that indicates, but I'm scared to try it again.