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-   -   My Story Please Read may help some (https://www.neurotalk.org/peripheral-neuropathy/152836-story-please-read-help.html)

brohar 06-30-2011 12:45 PM

My Story Please Read may help some
 
Male, 32
So in Nov 2010 i started have tingling in my right hand and zapping in my right foot. I also started getting muscle twitches all over my body. I was in a very bad state mentally and was in a lot of pain because of all this. By January, it was body wide. I saw many doctors and was told eveything from nothing is wrong, to stress, or just physical nerve damage that would heal. I saw a GP, Sports Medicine Spinal Dr, and 2 neurologist for these useless dxs.
In later feb 2011, as symtoms got worse, i got into the local university drs and was given a good blood work up. 1 week later I was told my B6 was over 100 and probably the cause. I went back over the records of the previous 4 months and sure enough my symptoms got worse during periods i was taking my basic multi vitamins and the b-complex i started taking because i read about it on this site. The patterns matched nearly identically.
Its now July and I am feeling tremendouly better. I have even resumed playing sports. I still have a fair amount of tingling and random shocks or pin pricks but they are barely painful. I still have random muscle twitching but it is about 10% where it used to be. Was it the B6 I cannot say for sure but it does seem likely.
I hope others can use this information and benefit from it.
The most important things are to find the right doctor(s), get your anxiety under control, becareful what you put in your body, and have hope.

PS. In May i found out a good friend was having nearly identical symtoms as me, she had gone through the same bad dr experience as myself. Even after seeing the top neuro in cincinnati!!! Well she finally demanded exstensive blood work on my recommendation and this morning she texted me that they found her B12 was 120... She finally has an answer, which i cannot believe took 6 months to discover. But thank god they did.

mrsD 06-30-2011 02:34 PM

Thank you for the update.

I looked back at your previous postings...and your use of B6 was not terribly high.

http://neurotalk.psychcentral.com/post754777-9.html

If you feel better without it, then you are one of the rare ones reacting to very moderate B6 intake.

Any vitamin test taken when you are using supplements will be higher than normal. Those ranges in use now are statistical averages on people NOT TAKING vitamins. Also if the sample is mishandled or mistaken...rupturing the red blood cells, the contents will spill out into the serum. This happens very commonly with potassium readings (showing higher than in reality).

There are people with metabolic problems who cannot convert B6 (pyridoxine) to P5P which is the active form in the body.
And there have been studies on autistic children who show elevated B6 with NO supplements at all.

Enough time has passed that you have perhaps had some healing of your original injury. I hope you continue on this positive track.

brohar 06-30-2011 05:17 PM

Quote:

Originally Posted by mrsD (Post 782724)
Thank you for the update.

I looked back at your previous postings...and your use of B6 was not terribly high.

http://neurotalk.psychcentral.com/post754777-9.html

If you feel better without it, then you are one of the rare ones reacting to very moderate B6 intake.

Any vitamin test taken when you are using supplements will be higher than normal. Those ranges in use now are statistical averages on people NOT TAKING vitamins. Also if the sample is mishandled or mistaken...rupturing the red blood cells, the contents will spill out into the serum. This happens very commonly with potassium readings (showing higher than in reality).

There are people with metabolic problems who cannot convert B6 (pyridoxine) to P5P which is the active form in the body.
And there have been studies on autistic children who show elevated B6 with NO supplements at all.

Enough time has passed that you have perhaps had some healing of your original injury. I hope you continue on this positive track.

Mrs D i actually never had an orginal injury, i thought i injured myself orginally because i was VERY active in sports at the time, however when the sensations and pain went from hand to foot to body wide, it was pretty clear that it was systemic and not just an injury.

mrsD 06-30-2011 05:24 PM

Thank you for making that clear. Your first posts concentrated on your activity level and falling on your right side.

This is a written venue and those of us here can only go on your written descriptions.

Many PNs start that way with an injury. The injury can cause inflammation which then generalizes all over. Another trigger like this is a viral infection, or vaccine. But whatever your situation, you seem to be on the mend...and that is all that really matters, doesn't it?

lexbrian 12-27-2011 11:42 AM

Your post gives me hope!
 
Thank you for your posting brohar. It gives me hope that I may finally find a solution to my sensory neuropathy.

I had much of the same symptoms starting in Sept 2011 -- burning on the hands, arms, feet and face and electric jolts in the toes and groin. It would move around from day to day and occasionally almost not be noticeable.

Like you, all the initial tests were normal and the doctors threw their hands up. I've seen two neurologists, an infections disease specialist and even an allergist who all tell me they can find nothing wrong. I had brain and throat MRIs, nerve conduction tests and a CSF to look for MS, lyme and other possible causes. I have even been getting chiropractic care for the last 12 weeks in case the cause was an impinged nerve.

After reading a lot on the web, I pushed my doc to check my B vitamin levels. This was the first test in three months that showed anything unusual. My B6 level of 91 was high like yours, so for the last 10 days I have been avoiding all supplements. It seems better but the symptoms wax and wane and it is too early to judge.

Since October I had been taking 250 mg of B6 daily which is plenty high enough to cause toxicity. However, prior to that I had only taken a B complex tablet. Perhaps as much as B-50 but nothing more.
This level of supplementation is considered safe for the general public, but I wonder if I (and you) may have an inhibition of PLP conversion. Is there a lab test for PLP?

I wonder if there could be an environmental link since I grew up in Cincinnati and travel there frequently.

Have you had your B6 level rechecked?

Thanks for your post.


Quote:

Originally Posted by brohar (Post 782691)
Male, 32
So in Nov 2010 i started have tingling in my right hand and zapping in my right foot. I also started getting muscle twitches all over my body. I was in a very bad state mentally and was in a lot of pain because of all this. By January, it was body wide. I saw many doctors and was told eveything from nothing is wrong, to stress, or just physical nerve damage that would heal. I saw a GP, Sports Medicine Spinal Dr, and 2 neurologist for these useless dxs.
In later feb 2011, as symtoms got worse, i got into the local university drs and was given a good blood work up. 1 week later I was told my B6 was over 100 and probably the cause. I went back over the records of the previous 4 months and sure enough my symptoms got worse during periods i was taking my basic multi vitamins and the b-complex i started taking because i read about it on this site. The patterns matched nearly identically.
Its now July and I am feeling tremendouly better. I have even resumed playing sports. I still have a fair amount of tingling and random shocks or pin pricks but they are barely painful. I still have random muscle twitching but it is about 10% where it used to be. Was it the B6 I cannot say for sure but it does seem likely.
I hope others can use this information and benefit from it.
The most important things are to find the right doctor(s), get your anxiety under control, becareful what you put in your body, and have hope.

PS. In May i found out a good friend was having nearly identical symtoms as me, she had gone through the same bad dr experience as myself. Even after seeing the top neuro in cincinnati!!! Well she finally demanded exstensive blood work on my recommendation and this morning she texted me that they found her B12 was 120... She finally has an answer, which i cannot believe took 6 months to discover. But thank god they did.


aussiemom 12-27-2011 10:03 PM

Interesting question, about environmental. I'm originally from Cinti too. Wonder if the smog inversions, or Drinking Ohio river water.....?


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