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Old 12-22-2007, 09:41 PM #1
lahgarden lahgarden is offline
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Default new problem Need Input

Hey Everyone,
I hope everyone is well, and enjoying the holiday season.

I need some input-
As you may remember I have Low b12, and have been treated for this for 2 years, with regular attacks relapsing & remitting, and new symptoms. I take injections and sublingual methylcobalamin.

I had experienced for no apparent reason too high B6, don't take regular vitamins.....high count of 96.

and
now,
too low vitamin b1.
I don't know the exact number, but it's low enough to have to start a injected protocol next week, when the doc's office returns to work, and gets my script set up.

What could possibly be going on here?
The neuro has thrown around "mitochondrial disease, renal proximal tubular acidosis, MS-"you're neuro exam is so abnormal, that anyone looking at you would say it's a classic open and shut case of ms, except for the b12 and b6 thing." and the current dx SCD.

I've had the b1 tested before and it was fine.

Any takers? Direction for other tests? MRI brain scan normal as of Nov.

I feel pretty run down, with nonstop neuro sx's. All the usual, balance, scotomas, spasticity, fatigue.......here's the new glitch, a pronouced weakness on the right side, especially leg, fell up the stairs once and down the stairs 2x's.
Doc's on vacation.
Help!
thanks a million,
laura
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Old 12-22-2007, 11:10 PM #2
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Lightbulb I have a B6 thread here now.

On it are some thoughts as to how B6 shows up high in people with no reason.

You may have to use activated form called P5P.
http://neurotalk.psychcentral.com/thread30724.html

Some drugs deplete Thiamine. Also there may be a genetic reason why you
don't have any.

Low thiamine causes beriberi, which is very difficult for some doctors to
diagnose in the US.

Tomorrow is a big computer fix day for us, so I don't know if it will go well, etc. I've been having trouble staying online. The router is suspect, among other things. I'll try to get back tomorrow evening if all goes well.
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Old 12-23-2007, 02:40 AM #3
lahgarden lahgarden is offline
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Default thank you

Mrs. D. and
good luck with your computer issues too.

Over the two years I've heard him say he's treating other patiients for beriberi. Which he finds bizzare, as this was prevalant so long ago.

I'm glad he's been on the look out for it.
Only research I've come across is an alcohol related issues. I'm the type who pours a glass of wine and takes two sips and carrys it around all evening.

The only meds I take is the b12, and Baclofen when I'm experiencing the spasticity symptons.

If it's genetic, can it occur out of the blue like this?
I'll have to look at what my past blood levels were.

Something really strange is going on. I feel like I have ice crystals running through my veins.

thanks,
I appreciate your input.
laura
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Old 12-23-2007, 07:48 PM #4
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Lightbulb it can also be

from malabsorption from a GI failure. Gluten intolerance, Crohn's or other inflammation of the GI tract can prevent absorption of vitamins, minerals.
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