I am finding it difficult to discern between the nerves possibly healing and when the neuropathy is getting worse. From what I have read in this forum, there is no clear answer.

Could somebody please explain what to possibly expect if the nerves are actually regenerating? Can it feel more painful and do the symptoms change in form (i.e. numbness becomes parenthesis and tingly feelings).

Knowing that we are all different, I would still appreciate hearing the symptomology of those of you who have improved.

--yes. To everything you asked.

Those who have experience healing--I am one of them--often did not know it was healing except in long-term retrospect (a good reason for keeping symptom journals, by the way, so patterns can be seen over time). During the process, the attempt of nerves to regrow and reconnect can be painful, and can also result in a lot of unusual parasthetic sensations as the nerve growth cones find their ways through and around other tissues. Many have said that this feels not unlike the original neuropathy attacks they've had, and they only noticed in time that these symptoms (very) gradually lessened or even eventually disappeared. At the time, though, it was often impossible to distinguish this from "flares" or "exacerbations" of symptoms, which might well feel exactly the same.

Our brains have little reference for how to interpret erroneous nerve signals--and that includes the signals that come from nerves attempting to regrow and reconnect, as well as those that come from nerves being damaged. So pain, tingles, zaps, electrical current sensations, pulses, feeling of touch that don't correspond to anything actually touching an area, weird skin tightness feelings, and so on--have been felt in both scenarios.

This is difficult to answer. One of our members who actually began and maintains a website on B12 --rose--- used to post here but has now moved on as she improved with proper treatment.

At one point she was extremely low in B12 and in a wheelchair.
https://sites.google.com/site/roseannster/home

If you search her name, you may find posts from the past that discuss or mention the healing phase of nerves.

I know just from myself, that my PN was terrible in my early 30's, and I had terrible foot pain, which I attributed to my job and long hours standing. (this was 37 yrs ago!). Eventually the pain subsided, and was replaced by numbness, and I became used to that quickly. When my thyroid tests finally showed the hypothyroid state, I was put on levothyroxine, and my feet slowly woke up. The tingling and pain returned, slowly, and then ebbed away. The numbness was gone. This process took a year.

When I joined the internet in the late 90's...I found our previous board for PN and started posting with rose. And now I am still here continuing her work 16 yrs later! Really the medical profession needs to get a grip on this. The American Association of Family Physicians has a wonderful link for doctors about B12 testing and treatment. It was put up in 2003. I have that link on the B12 thread here too. But still daily we have posters joining NT who have never been tested or who are very low and were told they were "normal".

So PN remains poorly addressed by doctors... B12 is only one of many issues they don't track or evaluate for many patients. And PN is extremely common, and aside from the hereditary CMT patients, mostly the causes are environmental.

Thank you Mrs. D. We actually corresponded about the B12 sometime ago. My B12 levels always come back abnormally high even when I stopped taking the supplements! So strange...

Interesting though. I just went to her site and it says that you can test higher than normal and still be B12 deficient??? Perhaps I will start taking the B12/Folic again!!!

Dr. Snow's article from the AMA...mentioned that some people in his studies, improved with neurological symptoms, when they were testing "normal"...with more B12.
Rose quoted this paper quite a bit. She was doing her B12 suggestions long before 2003, when the AAFP link was made which suggested a level of 400pg/ml. Some of Dr. Snow's patients were just below 400...and he considered them "normal".
In Japan the levels are much more than 400 today.

Since B12 is not harmful, raising it a bit really can do no harm, compared the symptoms some of his subjects were having.

Here is the link:
http://neurotalk.psychcentral.com/post698522-70.html

My B12 was 4,000 and I had only been taking a cheap B vitamin from walmart with the Colobamin or whatever, lol, kind of B12 in it. I dunno why it is so high.

As far as nerve healing, I have been looking for that answer myself, as my symptoms have taken a turn for the worse the last 2 weeks and I wonder if it is healing, hoping, or just getting worse. Everything I have read says when healing begins it feels awful and can last a long time as it takes awhile for nerves to heal. The most common symptom is itching and phantom pains.

Not joking: I'll let you know in a couple of weeks...

I've been experiencing a lot more pain in the last 2 weeks. It was rather sudden and doesn't really make sense.

But I *think* the pain/heavy feet/ cramping feels rather different than before. I just don't know, my brain seems to play tricks on me.

So either I'm relapsing (PN wise, not alcohol wise) or it's just a phase, possibly of further healing.

Whatever it is, I'm determined to not let it beat me. (But I do admit uttering a few F-bombs here & there for stress relief lately. According to the Mythbusters that actually even helps! )

WideO same here!

Mine did itch for the very first time ever, but then that went away, only happened once. But since that is a common healing symptom, I hope they itch again lol But mine really are acting up in a different way than ever before. I am praying its a healing thing and not getting worse. I say, let hope rise!

We shall see.

I'd get that test redone. Very high levels like that are not even done in all labs. Most labs only go up to 2000 in the reporting range.

1) if the red blood cells burst due to poor handling, then the result could be a false (factitious) high.

2) if real, this high a result suggests serious blood disorders, or
kidney or liver disease.