New Information

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Re: New Information

Postby PointsNorth » Tue Oct 16, 2012 4:50 pm

Thanks for taking an interest, Scott1. Please let me know if I can supply more info.

Just returned from my Gastro. He's been my doc for 25 years and was the first to suggest that I probably had MS and to make my way to the MS clinic. He did reiterate that my sky high serum B12 levels do not indicate malabsorption. I want to get to the bottom of that! Also, results from colonoscopy suggest bowel is pretty healthy. Tell that to my bowel.

I started the year trying to follow (somewhat successfully) the Paleo diet. I've discovered through elimination that I probably have some level of gluten sensitivity. I will try to get tested in the coming weeks.

I'm taking Meds for hypertension (Altace) and sleep (Aminotryptiline + Diamox). Never been on DMDs having decided 10 years ago that they were useless.
Taking steroids currently for bowel issues. Declining amount over next 7 weeks.

LDN periodically for bowel problems.

Daily Supplement Reg
Omega 3 (lots)
Vit D 6000 I.u.
CoQ
Selenium
Probiotic
MultiV
Zinc (hasn't worked for bowel for 6 mos.)

Not currently in line-up:
NAC
NAG
Green Tea Extract
Turmeric/Bromelain

Would like to try
Higher dose NAG
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Re: New Information

Postby Scott1 » Wed Oct 17, 2012 1:52 am

This is well outside my sphere but if I was you I would be wanting my Liver checked as extensively as possible.

It sounds like an infection.

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Re: New Information

Postby PointsNorth » Thu Oct 18, 2012 9:49 am

Scott,

Can I ask why you think my liver is involved? I will try to bring up with my doc next week.

Best, PN
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Re: New Information

Postby lyndacarol » Thu Oct 18, 2012 5:43 pm

Like Scott, I think it would be a good idea to have the liver thoroughly checked out.

I have totally unconventional ideas: I think that visceral fat (internal fat, especially a fatty liver) is part of the cycle that causes several diseases (including possibly MS). Maybe your physician can check for Fatty Liver Disease; the fat produces cytokines, which lead to increased insulin (which I believe causes many of our MS symptoms), which increases inflammation, which causes more visceral fat…

These four areas offer targets to alter or interrupt the cycle: diet and exercise may reduce internal fat, and insulin; anti-inflammatory foods may reduce inflammation.
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Re: New Information

Postby Scott1 » Fri Oct 19, 2012 12:02 am

Hi PointsNorth,

I readily confess I'm outside my sphere so don't over interpret my thinking. High B12 isn't normal and you have had some ongoing bowel issues which also isn't normal. Readings can be distorted by medications but high B12 can be symptomatic of blood disorders, hepatitis or cirrhosis. If you haven't got an observable problem based on those issues then I would check for an underlying infection that is affecting how your liver (or possibly your kidney) is processing a water soluble vitamin such as B12. Your history of surgery may have compromised your immune system and a good range of tests might find the issue. I'm sure your gastroeneroligist is good at surgery but he may not have looked for infections from old surgery that appears to be superficially fine.

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Re: New Information

Postby PointsNorth » Fri Oct 19, 2012 9:27 am

Thanks lynda/Scott,

I will bring up possible liver involvement with my doc (functional medicine). He has recently been to some conferences where he has brought up my B12 issue. I will report back with any noteworthy developments.

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Re: New Information

Postby PointsNorth » Sat Oct 27, 2012 12:57 pm

Liver and kidney function tests all clear.

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Re: New Information

Postby Scott1 » Sat Oct 27, 2012 3:12 pm

Hi Points North,

The only thing I can think of is get some bone marrow tests done. If it's not from those organs then you will have to check an earlier stage.

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Re: New Information

Postby PointsNorth » Sat Oct 27, 2012 5:52 pm

Bone marrow? Sounds painful!

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Re: New Information

Postby lyndacarol » Sat Oct 27, 2012 6:07 pm

Before I consented to invasive bone marrow tests, I would discuss with my doctor further noninvasive imaging of the liver and the abdomen, looking for visceral fat.

Or try a diet that will detoxify the liver – the people on Okinawa are often eating go-ya (a.k.a. bitter melon); the people on the Greek island of Ikaria are eating greens, specifically dandelion leaves which are also bitter. The bitter principles of diet, as found in dandelion leaves and dandelion tea, are known to detoxify the liver. As you know, I think many of our problems stem from a fatty liver: Visceral Fat (as in and around a fatty liver) leads to increased Cytokines, which increase Insulin production, which increases Inflammation, which increases Visceral Fat…
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Re: New Information

Postby Scott1 » Sat Oct 27, 2012 7:32 pm

Whatever you decide don't accept that high B12 reading. Keep pushing for an answer.
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Re: New Information

Postby Scott1 » Sat Oct 27, 2012 11:32 pm

Here's a different take-

http://en.wikipedia.org/wiki/Imerslund- ... k_syndrome

You mentioned that you had a resection of terminal ileum in '91. There is a receptor in the terminal ileum called Cubam. If you don't have an ileum then the receptor must be gone.
Imerslund-Grasbeck syndrome is a malfunction of the receptor. This might be your problem.

To quote from the link-
"Since the essential pathology is due to the inability to absorb vitamin B12 from the bowels, the solution is therefore injection of IV vitamin B12."

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Re: New Information

Postby lyndacarol » Sun Oct 28, 2012 9:59 am

PN – Scott has some great ideas. His thoughtful direction on vitamin B12 is certainly something to discuss with your doctor. All the best to you.
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Re: New Information

Postby dez2000 » Tue Oct 30, 2012 1:52 pm

Connecting the dots: See the internet: doctoryourself.com
The study of Dr F R Klenner’s life, as doctor in Reidsville NC is a classic example of a daring pioneer in medicine who chose to cure, not just treat his patients. Let him become your doctor. The Klenner Protocol is his cure for MS. …dez...
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Re: New Information

Postby PointsNorth » Tue Oct 30, 2012 9:29 pm

Holy B12 Batman! I've got lotsa reading ahead.

http://forums.phoenixrising.me/index.ph ... elation.6/
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