I'm always interested in hearing about others who have made progress in arresting the progression of PN. You mentioned the hills and valleys, hazards, road blocks etc. along your way.

To me that is the hard part in determining if you're getting better. The improvements are sometimes so slow that you measure it in months or even years rather than weeks.

As you started healing did you experience periods where it seemed that it was maybe getting worse instead of better? Did the flares slow down for a considerable period of time where you thought you making notable improvements only to have them come back and stay on for a near equal amount of time? I have experienced these effects (but not so much lately) which put some doubt into my mind that I was improving to any significant degree.

I know things have improved for me especially lately, but that kernal of doubt seems to rise up with a series of flares that come out of no where. I know the diary is the best way to gauge progress, but I would be interested to hear your thoughts.

Yes, that would be the hills & valleys. I could have stated it as 3 steps forward and 2 steps back, etc.

My flares have been diminishing in frequency, duration, and severity as I've learned about this ailment and figured out clues & triggers applicable to myself. I got into some sweets earlier this week (incorrigible chocoholic/sweet tooth) and I'm paying for it now. /

My expectations for healing are... humble. I'm probably in a bargaining stage right now, so I'll take what I can get. Tomorrow (metaphorically) I may reach beyond my grasp. One day at a time.

Doc

My PN just slowly got better. I would have times, only minutes, when I would have a bit of pain in my feet, then it was gone. I think the nerves were healing. I mostly just improve with no pain. I take so many supplements and foods that heal and no sugar, low carbs that it has all been a great slow improvement. I am thankful.

Before, I would only wear my UGGS to walk since my feet felt funny. I now walk barefoot on my wood and tile floors and it doesn't feel weird! It feels GOOD!

July 2012 will be the second anniversary of my diagnosis. My PN has not gotten better yet, but I am hopeful. So far, the only relief that I get is in winter. When the temperatures are cooler, my symptoms are less pronounced. However, my symptoms in summer seem to be getting a little worse each year. Maybe it is because summers are getting hotter each year. I do not know. Also, I find it more and more difficult to walk for very long because of the pain and dysfunction (feels like I am flatfooted) that walking brings on.

But how can I complain when there are some among us who are completely debilitated by their illness, and I am not there yet.

Hi Nervous,

Hope springs eternal. I, too, am hopeful that things will get better.

Last winter was my first winter with PN and it was extremely difficult for me to wear heavy clothes. Or, even just light sweaters, or just anything that touches my skin for that matter. I prefer the season now for the simple reason that I can wear less clothes, e.g. shorts and sleeveless. I have very hypersensitive skin and painful feet. I also could not walk and stand for a long period.

What are you symptoms? What supplements do you take?

I have a list of symptoms and of supplements. I'll have to get back to you on all that. But I appreciate your concern.

Things may get better for me. Or they may stay the same. But I am past the panic and fear over the fact that they might get worse. My affairs are in order, so I can take what comes, one step at a time.

This forum, particularly mrsD, have been a great help. I am easily discouraged by doctors — who, as everyone here knows, are inadequate — but NeuroTalk has been a substantive help and I am grateful.

Cheers.

I will glad to hear about your symptoms and supplements, and compare notes.

Yes, I feel the same somewhat. I can still get into a panic mode on occasion when things are flaring but overall I'm letting go of the fears associated with it. I'm 62 and I'm heading out the door anyway. My affairs are in good order and everything is in place in the event of my demise.

There is a phrase from the movie Croupier, which btw is one of my top 10 favorite movies. Hang on tightly, let go lightly.

I will fight like mad to cure myself or find a way to have a life in spite of what is happening. But if in my heart I truly feel I don't want to do it anymore or suffer it then I give myself permission to intervene in my own behalf. This IMO is honorable and good. Anyone who really loves me will support me in this. I can think of no greater loss than the loss of one's memories of the good times, to unremitting pain. I watched it happen with my mother.

I have had PN for almost 15 years, slowly worsening, as I had one doctor after another give up and tell me to just get used to it. The part that bothered me most, other than the painful symptoms, was trying to understand why this happened to me. I tried all kinds of diets, supplements, treatments, etc., to no avail. The problem was not finding the reason in the first place.
Finally, after all these wasted years, a doctor asked the gluten question. I have gone fanatically gluten free for almost 5 months. I understand that gluten burns out the B vitamin receptors in the gut, causing the deficiency at the root of the problem, and that it takes usually about 6 months to grow them back. I also understand that it can be a couple of years then to grow back the nerves.

So far, I am very encouraged. I have lost over 35 pounds of unwanted weight, and I am able to move much better than before. I still have the painful tingling in my feet at night, but I can go longer without problems, and I no longer have to pop ibuprofen to get through a day of work. Skin problems, like psoriasis, are gone, and I no longer have the pre-diabetic food cravings I had. I'm almost 66 years old, and feel like I've taken 10 years off how I look and feel; in only 5 months.

I know there are many causes of neuropathy, but I have learned that gluten is a major cause; it's also a major cause of diabetes, which is itself, a cause of neuropathy. It's hard for me not to be angry at the doctors who made thousands of dollars shooting electricity through me, and didn't care enough to walk across the hall to their own medical library, to read about celiac and neuropathy.

For anyone interested, there are several good references on this. The one I recommend is "Wheat Belly," by William Davis; about $15 from Amazon. I believe this can change lives.

I wish the best for all who are suffering from this; I'm convinced it can improve.

Steven

Congratulations to you Steven!

You might want to get tested for B12 levels. B12 is often severely impacted by gluten issues.

You should be at 400 or above in US units. Don't accept "normal" as many lab ranges are still outdated.