This Is MS Multiple Sclerosis Community: Knowledge & Support

from what i recall, b6 dosages should max at 100mg/d FYI

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

20mg/d or 50mg/d depending on rotation is what i am taking of B6, so probably not too high unless I am getting it from other sources. Still, I don't think I am going to start injecting it.

Inositol looks like it would be a great neuroprotective if my angled hydroxyl group layman theory by a person seeking neuroprotectors because his brain is acting like it needs one holds any sort of truth. Its a small molecule anyway and fits my look of a neuroprotective, but the science is all over the map on it because it is combined with so many different molecules naturally in the body, some good, some bad. Any take on inositol?

not me!

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

mrbarlow,
I'm not currently taking inosine, but have in the past. You may have already seen this, but I just ran across a 2009 pubmed study showing some benefit with inosine:

The Treatment of Multiple Sclerosis with Inosine

A noted concern of the use of inosine being increased risk of developing kidney stones.

Here's the Conclusion of the 2009 study:



Interesting.

--Tracy

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CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

fyi inosine is meant to raise low uric acid seen in ms patients.

why is their ua low? ms patients are low in zinc.

if you have enough zinc, your body can convert ammonia byproducts of digestion properly to urea.

i used to be zinc deficient and have ms average uric acid. when i fixed my zinc deficiency, uric acid normalized.

this statement is backed up with peer reviewed research and my own bloodwork.

i used to think inosine would be useful but now i think it is a band-aid solution.

zinc goes to the root of the uric acid problem in addition to boosting many other functionalities of a healthy body

hth!

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Ok, I've added 30mg Zinc to my daily regimen, in the form of Zinc Monomethionine (OptiZinc).

I'm still searching/experimenting to find the right mix of supplements for myself to help with neurotransmitters noradrenaline and met-enkephalin (opiod growth factor). The first stemming from recent studies showing noradrenaline levels to be typically low in pwMS, the second related to benefits to be found in the use of LDN in pwMS.

Noradrenaline Reduction in Multiple Sclerosis

I'm currently experimenting with l-tyrosine and P5P to boost noradrenaline without giving me the over-stimulation effect that comes with provigil.

Maybe I'll end up taking l-tyrosine once or twice a week, and LDN once or twice nightly each week (every night seems to be a problem for me).

I'm quickly coming to see how incredibly complicated our internal chemistry is, and how naive it was of me to assume I could come up with a neuroprotective regimen.

Edit_05122011: Nix the l-tyrosine. I just found that Copaxone is a mix of the four amino acids L-glutamic acid, L-alanine, L-tyrosine, and L-lysine. I've been shooting Copaxone daily for 12 years now, I doubt that taking an oral supplement of l-tyrosine would provide any additional benefit (and may actually upset the internal balance of neurotransmitters).

--Tracy

Edit_05122011: Add pubmed noradrenaline link

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CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

I have been unsuccessfully trying to restart LDN at night, and keep stopping again because of bladder side-effects (at least I think so, who knows). I've been trying to restart at a low dose of 2.0mg nightly, but notice an increase in bladder retention and leakage that is a problem.

From the web (and the manufacturer, unfortunately) Vinpocetine is said to have shown clinical benefits in helping to relax bladder smooth muscle tissue in both animals and humans.

Increased spasticity is a common side-effect reported with LDN, and is the reason I'm not trying to restart LDN at the standard 4.5mg dosage. I attribute the bladder problems to increased spasticity of bladder smooth muscle tissue.

So, new plan, I restarted 2.0mg LDN again last night after several weeks off (I hope to work up to at least 3.0mg nightly with time) and will start today taking 5mg vinpocetine with each meal, instead of the current program of taking it only once a day in the morning. If I don't get relief from the bladder issues within a week, I'll try bumping up the vinpocetine to 10mg two or three times daily. If that doesn't work, I may consider a trip to see a urologist.

Edit 05312011: I began 3.0mg LDN last night, up from 2.0mg.

--Tracy

_________________
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

I've just added 500mg N-Acetyl Glucosamine (NAG) to my neuroprotection regimen, taken before meals three times daily, based on a recently published report showing a link between D3, genetics, and NAG in affecting a "critical cellular function" with ties to MS.

Link Between Environment and Genetics in MS

This regimen is getting a little expensive and complicated, but I can do this right now, so why not.

Here's the full report with all the data:

Genetics and environment converge to dysregulate N-glycosylation in multiple sclerosis

--Tracy

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CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

With reference to the above post about the University of CA at Irvine study of N-glycosylation and MS, here's a link to the NMSS report about the same:

http://www.nationalmssociety.org/resear ... x?nid=5111

Unfortunately, glycosylation sounds similar to "glyconutrients" which was associated with the ambrotose craze of a few years ago.

This study is tied to some real science and is not associated with sales of a specific product. Vitamin D3 and n-acetyl glucosamine are available over-the-counter from a number of suppliers (and are relatively inexpensive).

--Tracy

_________________
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

I have tried for about a week using LDN at 3.0mg nightly, up from 2.0mg.

Each morning, I awoke with an unpleasant headache that lasted several hours into the morning.

I dropped the dosage down to 2.5mg last night, and there was NO headache this morning. So, I'm going to assume the reduced dose of LDN is better for me, and continue with 2.5mg nightly from now on.

Incidentally, at least TWO of the symptomatic benefits I ascribed to the CCSVI procedure I had in September 2009, I now believe were actually benefits of discontinuing LDN in advance of the procedure. These were: (1) no more morning headaches, and (2) an end to constant bladder leakage.

I was taking 4.5mg LDN at the time, and had been for a year. I had been living with morning headaches and bladder leakage during that time that I assumed were symptoms of MS and/or poor cerebral blood flow. I attributed their sudden disappearance to the CCSVI procedure. I am uncertain now.

To me, this is an example of how hard it is to associate a symptomatic benefit to a particular treatment when done alone outside of a clinical trial and as measured solely by subjective phenomena.

I've updated my neuroprotection regimen. 2.5mg LDN nightly.

--Tracy

_________________
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

Hi Tracy,

Great thread. I'm planning to make some changes to my regimen.

What does of n-acetyl glucosamine are you going for?

Kind wishes,

Abe

Hi, Abe,
The regimen I'm following is detailed in the first post of this topic, which I try to keep updated as I add new things or change what I'm taking.

I'm currently taking 500mg N-Acetyl Glucosamine three times daily on an empty stomach, about 30-minutes before meals.

Thanks,

--Tracy

_________________
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

For sake of consistency, I'm updating this regimen again, but with apologies to anyone who is following this. I've been trying to get LDN to work for me but am giving up AGAIN as the spasticity, morning headaches, and bladder issues aren't worth it to me. I don't want to start self-cathing again, and don't want to deal with the unexpected bladder leakage or urgency episodes.

Most recently, I've been using LDN in liquid form as prescribed by my physician, diluted to 1mg/ml, and I definitely recommend this approach to anyone who is trying to find the right dosage for themselves, the liquid form makes this very easy to do. I tried 1.75mg nightly, then 1.5mg, and most recently 1.0mg/night. The problematic symptoms lessen with dosage, but so does the expected benefit, and I'm not going to stick this out anymore in hopes the spasticity will lessen with time. I previously used LDN for over a year at 4.5mg/night, and the spasticity never went away during that time, but I didn't know LDN was aggravating this problem, I thought it was solely caused by MS.

The downside is that the liquid form of LDN is less stable than the capsule form. The pharmacy that compounds it for me says that in the liquid form, the prescription is only good for 2 weeks, so you need to work closely with your doctor to specify the 2-week amount that you expect to use per refill, in order to keep the cost down (I've got 100ml sitting in the ice-box that won't get used before it expires, which is a waste).

--Tracy

_________________
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

Tracy

I wouldnt worry too much about use by dates on drugs if you are talking a week or two.

It took a while for those genetic studies you posted to sink in with me. I added NAG to my regimen and increased by dose of vitamin d. I take so many pills now, it would be interesting what a top 5 list would look like.

So, if I had to narrow my thoughts down to a bare bones inexpensive OTC nueroprotective daily supplement plan, this is what it would look like:

5,000 iu vitamin D
1g N-A-G
Multivitamin and mineral
500mg alpha lipoic acid
B100 tab

(So many others! Too many options! These are all real basic. The temptation to draw upon the esoteric and exotic concoctions from all four corners of the earth was sadly repressed.)