Here is a quote from Wiki on this disorder:

This is only for the adult form. This genetic disease has other presentations, all of which are dramatic and disabling, and sometimes fatal.

http://en.wikipedia.org/wiki/Hypophosphatasia

People with this genetic error, will show very low alkaline phosphatase levels, on testing, and many other obvious problems with bone formation. This is a very rare disorder. I hope for your sake this is not your problem.

Vitamin B6 metabolism is very complex. There can be errors in many points along the pathways it takes:
http://www.kegg.jp/kegg-bin/show_pathway?map00750

Pyridoxine is near the center of the map, and is part of a square
showing formation of pyridoxal...and to the left is the fate of pyridoxal. The rectangular boxes, have numbers in them, and those are enzymes that have been coded so far.

This wiki article explains the chemistry further:
https://en.wikipedia.org/wiki/Pyridoxal_phosphate

At one time I read that about 300 reactions depend on P5P...
so this just adds to the complexity.

The most notable pyridoxine error in humans is B6 dependency.
These individuals require really high doses of B6 beyond normal to survive. This is a genetic error and also very rare.

I only provide these links and topics to illustrate how complicated B6 is in the body. And the medical community does not really have a good grasp on all the potential problems involving errors of utilization with it.

One of the primary sources for B6 is meat. Bananas are quite high too and most breakfast cereals and potatoes. Try avoiding these dietary sources, read all labels of other foods you consume, and get retested in 3 to 6 months and see what your P5P is then.
It is possible there is a source in your food that you have overlooked. This is the most common source. If you are still high after doing a dietary makeover....then genetic issues are what is left.

Hi mrsD,

I am one of these very rare individuals.

Because of this I have lived a very unique life. A brief description of the early years of my life is to be located in the 'New Member Introductions' section of NeuroTalk.

I have posted on several other forums around the world and had lots of very interesting replies.

Kind Regards,

Andrew

(I have now been prescribed Pyridoxine HCL - which I have been using on a daily bases - for over 42 years. I have also been using a multi B complex since 1990)

MrsD,

Thank you so much for your commitment to this multi-year thread. I feel more educated regarding B6 (active vs inactive), plasma and intracellular testing, etc. I truly appreciate your thoughtful replies and posts linking research to help answer questions members have. I hope to provide a comprehensive story (and future follow-up) that can be helpful to others. I apologize for the lengthy post... just looking for a few answers and hoping to help others. I apologize if it appears I'm "hijacking the thread." I can always delete and move to a different forum.

Here it goes!...

Personal Background:

31 year old male
6'0"
~135-140lbs
Northern European Caucasian decent
Grew up in Chicago (1982-1998). Lived in Florida since.
BS Engineering 2004
MS Business 2005
Work at NASA / KSC since 2006
Excellent Health History except for Migraine History (lately with aura)
Type A Personality
High Stress / High Anxiety
Diabetes, Cancer, and Cardiovascular Diseases do run in the family
Minimal neurological family history
Divorce 2007
Remarried 2009
Expecting first child May 2014

Health Complications / Neuropathy Genesis:
- Sold first home Dec 2012
- Attempted to buy second home Jan-Jun 2013
- Very stressful time

*** Diagnosed with Central Serous Retinothapy (CSR) June 2013 (fluid discharge behind retina)... completely healed ~ 6 months later. Linked to Type A high stress / high anxiety. I really scared myself during the process though. I literally convinced myself before seeing a doctor that I had macular degeneration, was going blind, etc...
- Started taking vitamin supplements and increased exercise vigor almost daily as recommended to reduce stress: acquired gym membership to weight train, ran 3-4 miles approx 3-4 times / week.
- Vitamin supplements were as follows:
- Isagenix Ionix Compound (basically a multi-B) B1 - 3mg (200%), B2 - 4mg (235%) Niacin 13mg (65%), B6 6mg (300%), B12 - 120mcg (2000%).
- Isagenix IsaLean Pro (basically a protein compound loaded with vitamins)
- Isagenix Greens (basically a digestive enzyme compound)
- I felt EXCELLENT taking these products for about 2 months.

*** Aug 2013 - Developed chest tightness. "Dealt" with it for a week or so until I started developing numbness in my right ring and pinky fingers. I initially thought that was ulnar nerve entrapment from weight training. Saw an orthopedic doctor who did not find any nerve entrapment and felt my symptoms were just transient and on their way out. I followed up with my GP to discuss the chest pain. I was diagnosed with costochondritis (rib cartilage inflammation). I took an anti-inflammatory for a few weeks and haven't had the problem since. To rule out heart problems, my GP also ran an EKG on me. I spit out an abnormal EKG (polarity issue). Said it was common in athletes. I still followed up with a cardiologist. After kicking the snot out of a stress test and getting near perfect imaging on an echocardiogram, I was told they don't want to see me for a heart related issue for 30 years!

*** Sep 2013 - Left leg developed some numbness and tingling.
*** Oct 2013 - Right finger neuropathy "spread" to right thumb and index finger
- I thought I needed more vitamins (they're good for you right!?)
- Organic multi-vitamin
- Ginko Biloba
- Biotin
- Multi-B
- Omega 3,6,9
- Magnesium (200-400mg)
- I was taking all this with the Isagenix supplements. At it's peak, I was taking roughly 12-13mg B6 / day. I know that is much less than values quoted for toxicity (see blood results below).
*** Nov 2013 - Starting getting neuropathy in left hand and right food.
*** Dec 2, 2013 - Woke up with twitching in calves. I believe stress threw me into a wave of other symptoms as my internet research was pointing at MS... I started to stutter for a few days, was forgetful. I made an appointment with a neurologist, but couldn't be seen for a week or so. Between Dec 2-9th I started developing some wicked fatigue, leg weakness, minor hip gait, upper back burning, increased urination frequency. I was convinced I had MS and my "first exacerbation."
*** First visit with Neurologist Dec 9th - Discussed symptoms and all supplements. Scheduled me for bloodwork and MRI. Suspected my B6 was toxic based on all the supplements I presented. She recommended I stop all supplements. My neurological test was fine (my balance was good, no numbness, etc).
*** Bloodwork results - All minerals, vitamins (including D and B12), cholesterol, sugar were "excellent." My B6 was 82 with 7-22 quoted as "normal." I see many posts regarding the misinterpretation of this and what "normal" is defined as. I plan to pursue some intracellular bloodwork. I will acquire copies of the blood work and post actual values.
*** MRI results - found two small white matter lesions. Believed to be migraine history related. Dr. wasn't concerned with size or location and doesn't believe I have MS.
- I significantly changed my diet to almost vegan. I did a massive amount of research regarding MS dieting while I was waiting for test results. Paleo, Swank, McDougall, etc. I've felt generally in better health since switching my diet. I have gluten food sensitivities. Just trying to avoid inflammation.
- I workout lightly 2-3 times / week
- Since I switched my diet to vegan and thought I had MS, I have starting taking the following supplements:
- B12 - 500mcg once / day
- D3 - 5,000IU once / day
- Omega 3 (don't recall intake amount)
- Magnesium - 400mg (75% absorption)
- Dandelion - mild effort to start a "cleanse"
- I am no longer taking any B supplements or Isagenix products
- My neurologist was OK with me taking these supplements and changing my diet.

Current status 1/4/2014
Symptoms include:
1) Small muscle twitches in random locations at random times of the day. I'll wake up with nothing, then I'll move a bit and my calves will twitch a few times. My right ear was twitching this morning. It will be in my back, in my stomach, in my arms, my glutes, my feet. Nothing so bad as to hinder movement, walking ability, picking things up, etc. Someone that isn't as sensitive to their body as I am may not even notice them or pay attention. It's just annoying and kind of scary because it's unpredictable... and I've always had perfect control over my body. As a sit here and type I can just feel a few "bubbles" in my legs and right temple area.
2) I just feel a little tight / weak in the legs after walking a lot.
3) My balance is off a bit, but I believe I'm fighting a dry sinus infection. MRI showed a deviated septum and my eyes have been dry. I'm tender around my nose and eyes.
4) My hands feel like I'm wearing thin gloves, and sometimes they will ache or I'll get a shooting pain that lasts a few seconds. My hands generally feel better the more I do something or the further I get into my day.
5) I notice that after I workout, the twitches are a little more severe and they aren't spaced out in time as much. But, they do decrease after a few hours.
6) I do feel some slight buzzing / tingling in my legs at random times.
7) Overall just kind of irritated / uncomfortable from the hand issues and twitches spreading in different locations.
8) I will note that I literally had no twitches from 12/26-12/31 after being on a diet very strictly for ~ 2 weeks... then all of a sudden they came back after I loaded up with food on New Years Eve. I ate swordfish, grilled chicken, hot dogs, corn chips... things loaded with B6... (so much for my diet plan). But, I'm back on it. I think this may be a key as to how my body processes B6...?
Food on my grocery list currently include: (egg whites, apples, pears, tangerines, asparagus, celery, cucumber, carrots, yellow and orange sweet peppers, shrimp). I know this isn't a "balanced" diet. I'm just trying to avoid B6 as much as possible and see how I do. Not sure if this is a correct approach.
9) No / minimal fatigue
10) Clear thought process
11) No stuttering

Near Term Plans:
1) I'm really tired of the guessing games and diagnosing myself. I plan to see a nutritionist soon and follow-up with my neurologist in late February.
2) I'm fully intent on following a strict diet (no gluten, vegetables, healthier low fat proteins, etc)
3) I plan on starting a massage protocol
4) I plan to continue working out lightly
5) I'm doing some light meditation / yoga
6) Pursue additional lower level / intracellular blood tests

Questions:
1) Do you believe my ~vegan diet and B12, D3 supplemental approach is ok?
2) Should I be supplementing with P5P?
3) Do you believe the change in my muscle verticulations after eating high B6 foods for a day or so is indicative of a pyridoxal kinase process deficiency? I saw your links to the autistic studies. I've never had a problem or reaction like this before.
4) Does this all sound like something more severe than just a B6 issue?

Again... thanks graciously for your time.

More than 100 mg a day of Vit B6 can casue damage to the sensory nerve cell bodies and is not recommended. This is well known

Hi all,

It's been a while since I last posted on NeuroTalk. I thought I'd share my experience of using (mainly) Pyridoxine Hydrochloride (Vitamin B6).

Here is my story:

I had my first seizure at two weeks old. I spent the first five months of my life in and out of hospital. Doctors were mystified by my illness. None of the ‘normal’ antiepileptic drugs that were administered had any positive effects. At this time I was having many ‘different types’ of seizures a day some of which went status. Countless tests were being done including, EEGs, lumber punctures… etc. A top paediatrician from the main city hospital told my mother that he was going to a meeting. He said he would talk about me in the hope that someone there would be able to help us. At this meeting there was a professor who was doing research into childhood epilepsy. He suggested a trial of Pyridoxine Hydrochloride (vitamin B6). Pyridoxine Hydrochloride was administered (I was almost five months old). Within two to three days my mother noticed a big difference in me. I’d stopped having severe seizures. Because of the positive effects that Pyridoxine had on my seizures doctors slowly weaned me off all the antiepileptic drugs (this was back in 1970-71). I’ve been prescribed Pyridoxine Hydrochloride on a daily bases ever since.

I was still experiencing my (mainly photosensitive) aura when taking vitamin B6 only, so in 1990, with my doctor's consent, I included a multi B complex tablet to my daily medication. This stopped my aura.

'PNPO Deficiency' has now been confirmed via a genetic test.

Regards,

Andrew

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**

Bumping up this older thread as it may be helpful to a new member.