Status
Not open for further replies.

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,951
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
First, I've not started taking IM B-12 yet. I see my doctor again on Monday. My local neurologist has an interest in DNA testing for various things. He doesn't charge for this part of the blood work. He is in favor of my starting IM B-12. I've been taking sub lingual B-12 for awhile so I thought I might start a B100 Complex for balance. I took a couple and they gave me indigestion but then had bloodwork and was shocked to see that my B-6 level was extremely high (91.1 out of a reference range of 2.1-21.7). I've been taking EPA/DHA for about two years as well as eating many of the foods high in B-6 on a regular basis (just because I like them....wild salmon, bananas, turkey, etc.)

Years ago I took IM B-12 for fibromyalgia but switched to sublingual because I couldn't get the IM without preservatives in it. My B-12 levels have always been high.

There is a noted correlation (at least according to what I've found) in high levels of B6 and nerve damage. I wonder if it's a cause and effect, coincidence or what? I think the last time I had B6 checked was 20 years ago when I was underweight and couldn't gain. All my Bs were average or high at that time with no supplementation.

Has anyone supplementing with B-12 had a baseline before starting supplementation or B6 tested?

I'll be interested in what the doctor has to say about all this? I looked back on my Mayo blood work and they didn't check me for B6, only B12 and all the other regular things to rule out mimics.

I ask because I'm concerned that high B6 could speed progression.



Attached is the blood results if anyone is interested in seeing the DNA part. I don't give it much credibility from what I've read.
 

Attachments

  • Blood test.pdf
    1.2 MB · Views: 767
Today I found out my B6 levels are high and I was stunned. I have never been tested before. I don't take a B6 supplement but I do take B12 as that was low. I like potatoes, eggs, spinach and salmon. They are the only foods I can chew easily. I read that B6 is usually flushed out of your system with urine and its recommended that you drink alot of water. Since I can't drink alot I don't pee alot so that could be why B6 is so high. I'm going to cut back my multi vitamin and watch my diet and try to drink more water. They will test me again in 6 months. Thanks for your post.
 
I saw my primary care who is an expert in nutrition and supplementation. She has the high dose B-12 IM so I don't have to go to a pharmacist to buy it. She treats quite a few MS patients with high dose B-12 and has for years. She does want me to work up to 25 mg twice a week by starting with a lower dose just to make sure I tolerate it (mainly because it has a preservative in it.) She was also puzzled by my B6 level and doesn't want to wait to re-test it, especially since I've been having sciatica. I'm glad I switched back from my Mayo primary care to my local primary care. She is much more proactive and willing to try different things. She noticed the muscle atrophy right away and picked out the areas that tested weakest. She wants me to start physical therapy and massage therapy right away to help my torn rotator cuff, help with range of motion, and address the general muscle soreness which she believes has other causes. So I'll get my B6 retested again. She knew all about the Japanese study on B-12 and many other things about ALS.
 
Kim T what is the Japanese study on B-12 you mentioned?
 
There was a study on intramuscular methylcobalamin that found increased survival in a subgroup of ALS patients ( 12 months or less since onset and still living independently). Some of us here are now taking it. My neuro recommended it strongly to me. Other neuros seem more cautious. No one knows whether this will translate to those of us who are not ethnically Japanese. However we can't wait to find out. They studied 50 mg twice a week, 25 mg a day and 25 mg twice a week. I think all showed benefit the first two more than the third. The results were presented at the MNDA symposium in December. I don't think the results have been published yet though a poster presented at a conference is online somewhere. Methylcobalamin is different than the usual b12 injections given in the US. There are several threads here if you do a search
 
Thank you, this is definitely something I'm interested in.
 
Status
Not open for further replies.
Back
Top