Nerve repair after 30 years???
 

Hi, I am new here and just now feel really lonely and scared. I have spent the last weeks reading on this forum and all excellent links especially the Vitamin B12 thread in the stickies.

To make a long story short. I’ve had nerve pain, mainly in my legs and feet, for more than 30 years, but also a lot of other strange symptoms in other parts of the body. Was diagnosed with a syndrome called ”Painful legs and moving toes” 30 years ago. The treatment has been symptomatic with pain medics, such as amitriptiline, tegretol, baclofen etc. For the last 5 years I have not used any pain medications. Symptoms for the last years have mainly been pain, twitches and cramping around my knees, not as intense as before, and also I have learned to handle the pain.
This summer I started to feel very tired and had difficulties coping with my job, I couldn’t think. It was like smog in my brain. I have not been to a doctor for the last ten years, when I gave up on neurologists who did not listen to me and told me everything was in my head. 6 weeks ago I went to a GP and she took a lot a tests. After a week she called me, and said everything was fine except B12 which was borderline, and she told me to drink more milk.

I started to search internet and found a connection with depression, tiredness, neuropathy and Vitamin B12, and went to the Pharmacy and bought a bottle of cyanocobalamin.
The first week I took 1mg/day. After 3 days most of the brain smog was gone. I increased the dose two 2mg/day, and after 2 weeks really strange things started to happen. I got pins and needles in my toes and feet, and intense pain in the toes, and involuntary movements in my toes. Those are symptoms that I had 30 years ago, but haven’t had for the last 10 years. Then after 4 weeks I got pain in my fingers and had difficulties to use my hands. That lasted only two days. I also got pain and pressure in my head, which lasted for two days. Right now I have a strange pain that feels like a constriction or pressure in my back, or inside the “spinal cord”.
It feels as if I am going through 30 years history of disease backwards. It is really very frightened and I am scared.
My current doctor don’t listen and still don’t think that I have a B12 deficiency since my B12 value according to her was normal, still she prescribed cobalamin, after I told her my experience with self treatment.
Could it be that what I am experience is repair of nerves or remyelination after 30 years of B12 deficiency?
Has anyone else felt this strange feeling in the spinal cord? It is so weird.

Thanks for reading my story and looking forward to any feedback.

It has not happened to me but from what i have read of other peoples posts you may very well be on the road to healing. People who have gotten better have described having symptoms similiar to earlier stages of their PN and some say the symptoms have come in reverse to the progression they had of PN. Keep up the good work. And if you continue to improve or not post here and let us know how you are doing. Not many people have had it for 30 years that post.

I would have to know what the actual numbers of your tests were.

"Normal" doesn't mean much.

There is even a Mystery Diagnosis episode about B12 being overlooked. A woman who suffered horribly for 10 YEARS before finding a doctor to help her. Her level was 200 all that time! I saw this episode on cable this holiday season, where one day they ran a marathon on Discovery Health channel all day.

You could also have other things going on, besides this one issue.

But with no actual number results, no one can really answer you here.

Thanks echoes long ago for reassuring me that I am on a good track. It has been some very scary weeks.
Thanks MrsD for answering. My S-cbl was 227 pmol/l, which I think is about 300 pg/ml, and the homocysteine was 15,5. I don´t know if the B12 value has been measured before, but will find out. I cant find it in my journal.

There is a diagnostic sign that some physicians use to
validate low B12 issues.

http://en.wikipedia.org/wiki/Romberg%27s_test

This is the test shown on Discovery Health, on that episode I
mentioned. A positive Romberg's sign is indicative of lost neuro functions, which can be induced by low B12 levels.

The homocysteine is high. Anything over 8 is not good.

It might be advisable for you to use all 3 vitamins that are involved with homocysteine metabolism:
Metanx is the newest mixture with all 3 Bs that are in activated form.
http://www.metanx.com/

Without a DNA test for methylation (MTHFR) you do not know if you are methylating your vitamins properly, so using activated forms of folate, B6 and B12 by passes that error.

Iviking, I experienced something very similar. When I first got PN, I went through horrible body wide symptoms. As the months rolled by it settled into a different pattern with some areas improving and some areas remaining the same and producing pain daily. Then last October, I started experiencing what I perceived as the PN going in reverse and showing the same symptoms as I once started with. I even posted about it here. I think I am better then when I first started out. I used to be in body wide burning pain all the time and it was especially bad at night. Right now, everything from the waist down is still not so great and is mixed with arthritis. Everything from the waist up, my trunk, my arms, my hands, etc. hurts more in flare ups now rather then 24/7. But that whole reverse symptom thing? Yes, I had it, and it's very strange...:confused:

MrsD
Thanks for the link to Rombergs sign. The neurologist did that test 10 years ago, and it was negative.
I had new blood tests a couple days ago, will be interested to see if it has been any changes in homocysteine after 6 weeks treatment with B12.
Metanx is unfortunately not available where I live (Sweden). I have used B-vitamins and folate as well, but not the activated forms. I don’t think they are available here, so I will have to bye them on-line. Do you think it is worthwhile to use the activated forms, considering the effect I got with cyanocobalamin?

Hope15
Sorry about your pain, it must be terrible. Did you do anything to induce the reverse or was it spontaneously? Before I started the B12 treatment I had pain mainly during the evening and night, now I have pain all the time. I hope it will start to fade off and heal.

Symptoms in reverse order....
 

I just started taking WSN Nerve Support Formula a few days ago. After the very first full dose, the burning pain in my feet was almost gone. This was after two solid weeks suffering with burning feet. The next day, I had some lite random tingling & numbness in my hands and feet, which only lasted for one day.

This follows the same pattern that my symptoms first appeared, but only in reverse order as others have observed here. I find this to be very positive and encouraging signs heading towards total healing and recovery even though my symptoms are not yet completely gone.

I've made lots of other lifestyle changes including diet, exercise, yoga, and taking many different supplements such as Acetyl L-Carnitine and Alpha Lipoic Acid which in combination have all helped relieve my pain and symptoms.

I'll always have to be on guard from now on and continue exercising, watching my diet, and taking supplements for the rest of my life to hopefully remain symptom free and healthy. It's an ongoing learning process.

Thanks to these boards and the experience found here, specifically MrsD, Wings42, and others, I quickly learned what to do and that I needed to take charge of my care instead of depending solely on my doctors looking for the right answers.

I hope to return the favor and help others through this frightening experience and offer some hope and encouragement that things can and do get better over time.

Happy New Year and wishing the best of health to all...!

This is iherb.com shipping for international orders info:
http://www.iherb.com/info/shipping/International

Yes I would use the activated forms. All 3 are available from iherb. People who have complex issues, might be having trouble with activating these 3 B's in the body. People who come here usually have no problems with methylcobalamin.
Genetics are complex in this area, and DNA failures are showing up in more people, as the testing becomes more available and less expensive. P5P and methylfolate are also availabe from iherb. You probably don't need the high folate in Metanx, I'd say 800mcg of the active form is probably enough.