Update on my surgery decision
 

I decided to go forward with the lumbar decompression surgery, which I had done on 11/30. It was a 2 level decompression done at L3-4 and 4-5.

As I have mentioned earlier, I had this done because 3 doctors told me I needed it and because the neurosurgeon here in Atlanta who did it was almost completely convinced that it would relieve the PN which I have had in my feet for the last 8-10 years. He said that the compression at the 2 levels was very, very severe.

In addition, the doctor I visited at Johns Hopkins discovered that my B6 level was very high and instructed me to stop all B6 supplements, which I have done (starting about 3 weeks ago).

So far, which has been about 16 days, I have not experienced any relief with the PN in my feet. The neurosurgeon said that it is way too early for that.

I am wondering if the compression was truly causing my problem, how long should it be before I notice any changes/relief? Everything I have read on the forum previously leads me to believe that it does take quite some time for the healing process.

I would love to hear your honest opinions regarding my situation. Thanks so much.

As far as the B-6, mine was also high--47.4, reference range 5-30. I had small fiber sensory neuropathy in my feet, legs and hands. I also had electric shock sensations in my arms. Two weeks after stopping B-6 supplements, symptoms subsided. The numbness has taken several months to resolve. Unlike your situation, I have an underlying neuropathy that complicates matters, possibly mild CMT. I hope, once you stop the B-6, things will improve.

I think it is definitely a wait and see thing, and individual cases vary in their results. My mother had a trapped nerve in her neck released, but did not experience any improvement in pain. She still has it (the pain) over 10 years later.

That doesn't mean that your pain won't improve, as I think individual cases vary a lot. Got my fingers and toes crossed for you

Raglet

I would think at least 3-6 mos, if not longer - for
injured nerves (trapped) to heal. Sometimes it can take
3 or 4 years to recover at least 75%-85% of prior state.
Injured nerves are very slow to regenerate.
When they do, it is possible that new pathways are grown, to bypass any that may not heal properly.
Expecting 100% recovery may be setting the bar a bit high.
Check about supplements to help improve
the healing process (esp B12).

Regarding blood levels of B6:

1) Studies have shown that in autistic patients, B6 can be elevated when NO vitamins are used.
2) also there is a factitious (false positive) for potassium. If the tourniquet is on too tightly, or the blood sample is handled wrong, the red cells can burst and release their potassium to give a higher than normal level, in the serum which is what is tested. I am wondering if this can happen with B6 which is inside red blood cells.
http://www.ajcn.org/cgi/content/abstract/50/5/1059
If the red cells break open during the blood draw or later due to poor handling, there could be a false positive high reading.
The only way to test this is to redo the test, and not use any supplement of any kind for many weeks before the blood sample is taken. If it remains high for no reason, that indicates either it is not being used by the body properly ..activated to pyridoxal, or is somehow a factitious reading.
I searched the net this morning again, and this question comes up on many other sites, and the typical answer, is "don't know".

If you stop all B6 and still have neuro symptoms, and a high reading in the blood serum, I'd consider using activated B6 called P5P. B6 is unusual because deficiency and excess gives similar symptoms, and this is very difficult to evaluate, if the testing procedure may be flawed.

Mrs. D, I was recently diagnosed with PN and I wanted to ask you about B6. I had been taking one multivitamin with 3 mg of B6, 2 calcium citrate supplements with 10 mg/tablet and one B50 supplement (periodically). Total B6 intake from supplements was 73 mg. My pyridoxine level was 47.4 ng/ml (ref range 5.0-30.0). I had significant peripheral neuropathy symptoms at that level. I stopped the B6 and most symptoms subsided within a couple of weeks. My current B6 level is 5.0 ng/ml and I am taking no supplements. I should add I still have an underlying mild neuropathy which my neurologist suspects is CMT. I don't have any neuropathic pain, just some spotty numbness in the feet. Everything I have read says I should be okay taking up to 100 mg of B6. Why am I different? I'd like to take some B6 just to get a little higher in the normal range. Do you recommend the P5P? By the way, I am a 60 year old male, otherwise in good health, very physically active.

People vary in how they activate B6. The pyridoxine in standard vitamins is the inactive form --pyridoxine HCl. This is activated in the liver and blood cells to pyridoxal phosphate, which is the form the muscles use. If one does not metabolize this properly due to genetics or damage to the enzyme (some drugs block this conversion) the pyridoxine builds up. It is not known why it is not excreted properly either. For some reason autistic kids show elevations with no supplements. This is not understood either, at this time (I put that paper up here).

Not much is known about B6...I've searched for years to find usable information about it to post here. Not many doctors even test for it.

The actual number of cases of high dose toxicity are very few and mostly gathered from the days when PMS treatments involved 500mg or more a day. There are a couple of papers on PubMed describing rare reactions to B6 doses in the 50-100mg range daily. But they are very few...less than 5-- I could even find.

This problem is complicated by the fact that PN symptoms when B6 is low are the same as for when it is high. How can one tell which is the cause and which is the effect? Until someone gets funding to research this, all we have is anecdotal reports.

However, Dr. Bruce Ames who researches mitochondrial issues, aging and cancer, has published his opinion, that people vary genetically in how they use the B vitamins and hence what works for one person may not work for another.

B6 does not work alone in the nerves. B12 and folic acid work with it.
CMT is a special case, and you'd have to check out their websites to see what they recommend for P5P type of B6. In general, none of the toxicity papers mention what type of B6 caused the problem. Some say pyridoxine. P5P is a special form, which was not common 10 yrs ago when I found it and started posting about it. I use it myself. Since those days, more people know about it, and it is even being investigated as a "heart drug" and the company doing so wants to take it off the OTC market so they can have exclusive rights to make money with it:
This link has more information about this situation by Big Pharma:
http://neurotalk.psychcentral.com/sh...ight=pyridoxal

Mrs. D, I think I may have mentioned this earlier, but my B6 was measured at 117 ng/ml. I was taking 25mg P5P per day as well as 17 mg as pyridoxine hydrochloride per day. I have stopped both of these supplements as requested by my doctor. It's been about 3-4 weeks and so far I do not see much difference in the burning feet, in fact, I think they may be worse. I plan to get the B6 tested in about 6 months.

And of course now I have introduced the lumbar decompression surgery into the
equation. It has been about 2 1/2 weeks since the surgery. The consensus here on the forum seems to be that I must be patient depending upon how badly the nerves were compressed (is a year a long enough time to be able to say whether it has helped or not?). I don't expect everything to just disappear but I do hope that I may get some relief and allow me to function better.

I will say...besides this being very confusing, and hard to understand...:

If you were "toxic" in B6 levels, and only had foot problems I would find that disturbing. Toxic responses in the body are mostly global, and other areas would be giving symptoms, not just the feet. I had severe neuropathy when I was 30 and after, that was due to hypothyroidism. My hands were just terrible and very painful and weak. When I had that fixed, much of my foot pain resolved (took almost a year tho) and my hands were better. I use P5P to improve my hand functions still today. Gardening and use of some tools, will set it off again if I am not careful.

If neither of you have hand issues, or numbness in other parts of the body besides the feet, I'd wonder if the B6 is the only culprit. Logically you should have symptoms elsewhere if that B6 is elevated enough to cause damage.

Atltom--Your level of B6 was quite high. Maybe it takes longer to resolve. My toxicity was less than half of yours but I also had burning feet. It felt like I was walking on hot coals. My symptoms progressed within several weeks. I had loss of pin prick sensation, stocking and glove distribution, minor sensory loss (proprioception) in addition to the burning. I remember lying in bed one night about two weeks after stopping the B6 with the burning feet and when I woke up the next morning, the burning was gone and has never returned. That was about 8 months ago. I had my B6 tested about a month after stopping it and it was 12 ng/ml. My initial symptoms were in my arms and I still have some hand tremors after a year but they are getting better slowly. That also could be the Charcot-Marie Tooth neuropathy. Also, the numbness from the SFSN has taken a long time to resolve but hasn't been as troubling. Is there any reason you wouldn't want to test your B6 sooner than 6 months? I would think your levels would normalize sooner and that might be useful information to distinguish B6 from your spinal nerve symptoms.

Thanks Kitt. I have an appointment with my neurologist again in February. I plan on asking for the genetic test at that time through Athena. When I saw him last, it wasn't a consultation so I didn't have much time to get details. He just said he suspects I have a heridetary peripheral neuropathy. I don't know which test would be appropriate, I only know I have a demyelinating neuropathy. My first EMG/NCV with a different neurologist indicated I had an axonal and possibly demyelinating neuropathy. So it's not clear to me right now which test to take. If you have any ideas I would be glad to get your input. I am assuming my neurologist is familiar with CMT but I don't know for sure. He is the head of neurology at the hospital I go to and he has been practicing for about 40 years. Believe me I am anxious to find out. Any help you can give from your experiences would be appreciated.

Jon

JonAlex, Perhaps you are right, I should get my B6 checked sooner.

My burning feet, electrical jabs, stocking feeling all started in my left foot about 12 years ago. It progressed and got worse until suddenly, about 5 years ago, it was also in my right foot. And now it seems that I will have good and bad days with both, but not necessarily at the same time. I have had it progress to my calf area but never any higher. And other than an occassional tingling in my left hand fingers, it has never affected my hands.

In addition to my lumbar stenosis, which should be helped now with the surgery, I also have issues with my cervical. It is also loaded with arthritis but my neurosurgeon said I am better off treating it with nerve blocks, epidurals, etc. He said he would not operate because it would lead to my entire cervical being fused.

From what MrsD is saying, it sounds like the B6 may not be my problem and perhaps the compression was. I guess time will tell and another reason to get the B6 checked sooner. Thanks for your input.

Kitt--No one on my mother's side of the family has CMT. My father died when he was in his 20's and I don't know anything about that side of the family. I am pretty sure I'll be able to sort out which testing I need when I again see the doc. I know about the Athena program. I requested to have a rep contact me. Every bit of info helps.

Jon