NeuroTalk Support Groups - New to PN and the site, anyone know the odds?

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- - New to PN and the site, anyone know the odds? (https://www.neurotalk.org/peripheral-neuropathy/178174-pn-site-odds.html)

Quote:

Originally Posted by Thefarouk (Post 931169)

Ok back from the latest checkup. Actually my Dr did know the D2/D3 issue, and requested D3 - apparently the pharmacy filled it as D2. We discussed, I'll be ceasing the D2 and start taking 10,000IU/day of D3.

Most of the other blood numbers are in

Vit A 0.39 mg/L (in range)
Vit B1 whole blood 163 nmol/L (in range)
Vit B6 75.4 ng/mL (high)
Vit B12 303 pg/mL (in range)
Vit D 12 ng/mL (insufficiency)
Cadmium <0.3 ug/L (in range)
T&H 1.93 uIU/mL (in range)
Arsenic whole blood <10.0 ug/L (in range, but a bit high)
Lead whole blood <2.0 ug/dL (in range)
Mercury whole blood 4 ug/L (in range)

Pending: B3, B5, B7

Finding a decent neurologist is being difficult - my doctor said, humerously, most neurologist suffer from Ashburies :) the point being, not many go into the field. The new neurologist just reviewed my chart and also wants to send me to UofW, but my primary care wont accept that the waiting list is into March. Since he knows the other neurologist he recommended, he's going to call them and they're going to have a 'chat' about my case, and he's "sicking his bulldog" (one of his med techs) on the folks at UofW until they agree to see me.

Some speech recognition software and a $3k hand control unit for the brakes on my car, and I may even be able to get back to work.

Hanging on...

and thanks again!

/Bob

I've bolded your B12....it is in range only for the outdated ranges! The new lowest low is 400pg/ml.
So you need to start oral methyl B12 now, at least 1000mcg/1mg a day on an empty stomach. It would be best to do 5mg a day for 3 months and get retested.

Arsenic can come from natural sources, some foods, and well water. If you have pressure treated wood wash hands after handling. Don't breathe fumes from burning pressure treated wood either. Best not to burn it at all.

The B6 is not really too high compared to some ranges that go up to 90.
labs vary. edit to add: I went back and reread this thread, and you were taking vitamins when you had the testing. This is probably why for the B6. But it makes the B12 even more concerning, if 303 was the result coming back when you were supplementing a multivit.
Also, multivits may contain Vit K... look at your label...it they do they will interact with the coumadin.

When a pharmacy gets an RX that just says Vit D 50,000 IU...it will fill with D2, because there is only one D on RX and that is D2. It remains on RX because of historical reasons, and its status was never changed by the FDA.

more data and a possible clue!

Well after my doctor had to make a few unpleasant phone calls, finally got in to see the folks at UofW neurology center. Met the doc I saw while i was actually in the hospital, got more data and some hope.

The whole time, the theories around my PN have centered on my B12. Problem #1 - she did recommend B12 injections (weekly) post release from the hospital, but its only noted 1 place, and the pharmacy, my doctor and I all missed it. I should have been on B12 shots this whole time. Those will start soon as I can get to my doctors office. She was happy I was up to 303, but wants me much higher - over 500 (hey, where have I heard that number? :D)

She also did some tests (and we re-did them today, waiting on results) for co-factors to B12: specifically Methylmalonic Acid and homoscysteine. According to her, while my B12 was barely within range at the bottom end, both these cofactors were very high - which leads her to think this is still B12 related. If I understood correctly, it sounds like the enzymes my nerves need are created as part of the Krebbs cycle, and the high level of cofactors (i didnt get the actual numbers, but i will), is leading to polymylamic breakdown.

While I still clearly have neuropathy, the palpable tests were better - in the hospital i was having no physical reactions to reflex tests - now I have some, but insufficient reaction with slightly better results on the right side, slightly worse on the left.

Hopefully this theory will pan out, and kicking those B12 levels way up will finally knock this thing. If so, though, the question becomes why are those cofactors so high/why is my B12 so low? Could it be related to the rapid weight loss?

/Bob

What the MMA and homocysteine show is that your B12 is not working properly.

This can be due to methylation problems. The shots if cyanocobalamin type need to be methylated and if you cannot do that due to genetic mutations, MMA will remain high in spite of them.

That is why people with problems with MMA and Homocysteine typically use methylated forms of B12 and folic acid (methylfolate).

If you cannot convert cyano form and methylate it shots will not work.

Bent from here had 23andme DNA testing and this thread
explains more:
http://neurotalk.psychcentral.com/thread179732.html

Mutations in the MTHFR area mess up the methylation of B12 and folate and hence MMA and homocysteine would be elevated.
He is now going to get further testing in this regard.

I know it looks complicated but if you read it more than once it all starts to make sense slowly.

Your best bet is to take oral methylcobalamin 5mg a day on an empty stomach, and 800mcg Metafolin daily (by Solgar). Both of these forms are methylated and should improve your MMA test and Homocysteine. Most doctors don't even know about methylB12, and that oral is as good as injections.
You can do this yourself. The Metafolin costs more than the methylB12, but both of them are still affordable.