Hi

I've been reading as much as I can and it seems like there is such a debate about whether small fibers can heal. I find some stuff that says they can ( usually related to diabetic though). Others say no but Measures can be taken to stop further damage.

My question is... If I'm already positive for sfn meaning over 95 % of my nerves are damaged (lliterally every inch of my body experiences tingling, pins and beedles, burning, stinging and severe muscle twitching which means hundreds to thousands per minute all over) then what's the point of trying to prevent further damage? It can't go anywhere else.... Why torture myself with food restrictions and food I hate ?
My biopsy didn't indicate condition of fibers so I dont even know if they are healing or still being damaged. My guess is that because I'm progressing they r still being damaged. I just can't figure out why because I'm positive mine was due to trauma and or rx drugs. Those thing are gone so why continued progression? Everything says if u remove the cause u can start healing, why am I getting worse?

While I suggest eating things that you detest, I think dietary changes- even small ones- are a smart part of any plan with neuropathy. Mine is labeled diabetic. Eating too much sugar or carbs will make me see the light in the connection for me.

I will be 19 months eating vegan in a few days. I just picked up some spices and other items to alter what I eat a bit more, though scattered better throughout the day. I want as little fluxuation as possible in my bgc.

There is no way of knowing if diet has had an impact- I am worse than 19 month ago- but how much worse would feedbagJon have been than KNJon?

My feeling is night and day.

Good luck.

If healing hurts and damage hurts there is no way to know, in the moment, which is going on. The diabetics know the relationship with inflamation and sugars in the diet. Your root causes may well be trauma or toxin and your dietary needs are not mapped out as with diabetes. In my search for mitochondrial health, understanding nutrition is not that simple. For instance vegans have a belief system that tells them that they are doing the right thing. I on the other hand would worry about any diet that would fall short on the B vitamins and Iron. Mrs D has taught us all from salt to seaweed and supplementation. I am not criticizing anyone's path. I am trying to say that this is your path and do what you need to do to get to tomorrow. Your self-imposed dietary restrictions may be adding more misery than the benefit, if any, they bring. If you keep a journal and you have been on this diet (just guessing here) for two weeks and nothing has improved as far as energy, alertness, pain,sleep, anything that you would hold food responsible for, then give yourself a break. I love grilled trout, and I know that it is packed with nutrients should not harm me. Nutrient dense foods have a hierarchy. First is Mollusks then Crustacions then oily cold water fish on down the line to organ meats such as livers and so on. The plants have the same ladder. Eating is primal on many levels and has the potential to add quality to your life. I hope for you that you find that balance between nutrition and satisfaction. Ken in Texas.

You are not going to know if your nerves are healing or progressing from just one skin biopsy. It's just a snapshot in time. If you have a second skin biopsy a few years from now, then you can compare the two and know if you are healing or progressing.

Ken makes a lot of sense. I choose to eat clean nutritious foods as much as I can and stay away from as much junk as I can....I'm not perfect and I don't deal with some of the nerve damage I read about here, but I do deal with nerve damage from hip surgery.

Ken, I'd LOVE your grilled trout. Takes me back to years ago, a bf, cooked me lovely grilled trout dinners....

And feet have gotten worse with OA in the last 7 yrs or so, so I deal with that stiff weak area of my body.

There is nothing I really hate in the food world, I'm so much like my mother...she ate everything. I reflect a lot on my life as I age.

I really feel the OPC's will help overall....

I've been doing some reading on reasons for nerve damage: I read diabetes, alcoholism, trauma from surgery or accidents (surgery my issue) don't know what else.

My bridge friend I've talked about here says she has ideopathic but I'm thinking she's diabetic even though doc says no, but she's said she was told borderline...she does not hold back on carbs/sugars....I've given up talking about that to her. She is feeling better on grape seed extract...so I'm at least glad for that.

This woman deals with squamish cell cancers and has had major work with these cancers in cutting them out and radiating etc...and I've also talked about sugars and cancer cells, but she doesn't hear me. I know if I knew of any cancers in my body I would be more fearful of sugars.... Her neuropathy is most likely from all the cutting and radiation she's been thru and her diet hasn't helped.

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

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.

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