What does healing feel like?
 

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.

In a word--
 

--yes. To everything you asked. :D

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". :rolleyes:

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.

Really? I shared those test results with you two years ago and you said it was just because I had not stopped taking my B vitamins.

That is also a possibility but really 4000 is way out there.

Could be a lab mistake too.

I had posted and asked you about my MMA results, which to this day I really never understood. I dunno, I just put them away and moved on.

Stacy here is the thread where I address your level of 4000:

http://neurotalk.psychcentral.com/ar.../t-179340.html
Any odd or suspicious test should be repeated. This would rule out lab error, or mishandling of the sample. If the red cells burst (which happens sometimes), they dump their contents which include B12 into the serum and inflate the result.

I've posted many times on NT about factitious results like this, as it is pretty common with potassium too.

But you really need to know, if you are sustaining levels of 4000 for a period of time, you need to know what your levels are without taking supplements. Since you are under a doctor's care and have been so...you should follow up on this.

Sustained high readings when no supplements are used, implies a disease state of some kind...most of them are serious.

So while the B12 is not in itself harmful, the signal of a high level may need to be followed up on.

Here are my MMA:

My results:

B12 serum >3000 pg/mL High Range 193-982
MMA
Methylmalonic Acid >0.08 nmol/mL Range >0.40


Does this mean anything to you because I never understood it.

I will retest B12 next time and maybe I will stop taking it altogether for a month before I test.

Oh, also it was 3,000 not 4,000

The MMA test shows if B12 is actually working.

A high result indicates B12 is NOT working.

So a desired result is a low number.

http://www.nlm.nih.gov/medlineplus/e...cle/003565.htm
Your typed result is confusing. It is unclear to me what it supposed to mean, and what YOUR result was... It looks to me like it is only a range given.

The upper range may vary from lab to lab.

I just looked up my original lab result and it is exactly as posted above.

The 0.08 is my lab results and the 0.40 is the reference range, only that one number.

I never did understand it not then or now. I called the lab and they didnt explain it to my understanding either so i gave up. Other than it is a higher number than the reference which means I am low in B12 even though my B12 test is so high. not that I understand that.

.08 is much less than 0.4....

MMA builds up in the body if B12 is missing, or not working properly.

So a good MMA result is a very low number. The .4 I guess is the upper part of their normal range, and anything over that is considered pathological and poor B12 levels.

ah, well, I guess that was a good number to get for MMA.

Guess I will stop B12 and have it checked some time.

Thanks MrsD!

I'm hoping to share in the answer soon. Yesterday was brutal pain wise, and I'm proud oh myself for powering through without getting mentally overwhelmed. Maybe it's just the prozac I started taking for all this which seems to make me feel emotionless lately :rolleyes: Anyway I tried telling myself that the increased pain and symptom change is a sign of healing. If not I'm going to be in an increased world of hurt shortly.

I hope healing is what you are getting.

Mine turned out to be quite the opposite. All those new symptoms have led me to hell. :(

Hi All,
Quick question, when you experience healing of nerves, I have read on posts that the symptoms can become worse before getting better, but can the healing process also produce new symptoms and in different areas. Interested in any wise thoughts?? Thanks.

Welcome micholson. :Wave-Hello:

Basics
 

Hello rnicholson, no wise thoughts here, just the basics as I understand them. Symptoms vary greatly,healing or worsening. Think positively. Eat nutrient dense foods. Study for Mitochondrial health. Exercise to tolerance. Know your B-12 #(important for all but especially if Metfornin has been taken for extended time). If you feel pain may drive you to depression, seek help. If you cannot sleep, seek help. As this was your first post I am assuming that you are asking about healing pain already. I hope that is the actual scenario but do understand that the human body actually blocks speedy nerve regeneration. Some of the latest research involes knocking down these barriers. P-10 Knockdown. Post and tell us if there was an underlying factor. Usually that has to be addressed first. I would not be suprised if you could be going uphill in one area while going downhill in another. I had been in water therapy for two months working on my right leg when my left leg got lonely and joined the party. So give more info and these folks here have been there. They are a great bunch and have helped me greatly. Good Luck, Ken in Texas.

I am not sure but i think i am healing i reconnaissance allot in what mrs d is saying.
I used to have incredible foot pain that is not slowly numbing the same goose for may hands.
The inflammation i have in my feet is getting less and less but numbness is getting worse in feet and hands i have no idea where this is going to end.
So any ideas how to wake up my nerves agian.

Buy the way i found a article in a australian pain journal that described a clinical trail with 10 patients..they had some form of neuropathy.
8 patients did realy well getting stemcells from there own bodyfat

If you want to know more google "A preliminary report on stem cell therapy for neuropathic pain in humans"