I am putting this info together to ask doctor about certain levels in the body that may indicate an absorption problem (malabsorption).
IE a person can have B12 serum levels that show normal but if homocysteine levels are elevated it can indicate a B12 deficiency. So might be best to get homocysteine levels checked, etc. It does NOT matter if B12 is in your blood if it can be broken down and used by organs it is NO good.

http://www.blackwell-synergy.com/doi/abs/10.1111/j.1600-0609.2005.00563.x

Some might ask why look into this ..can anythign be done IF something is found?? It depends. Seems like many of the MALabsorption issues I am researching can be mitigated. This is to say if you take B12 injections on a regular basis for those who can NOT absorb B12 into bloodstream this SHOULD help. If doc says you have LOW estriol levels then estriol pill once a week may help. If you have B12 in bloodstream but can NOT break it down (lysozomal issue) then you may need to ask doc about Methylcobalamin. IF doc says you have P anemia due to low intrinsic factors then there is a patent for substance to help (see below link).

http://www.patentstorm.us/patents/6183723/description.html
Oral B12 for those low in IF or receptor deficient patients

http://www.nlm.nih.gov/medlineplus/ency/article/000569.htm
Intrinsic Factor(IF) deficiency info

I am just trying to get as much of this chain put together as possible so I can ask our doc about getting tested for specific items. Making sure they get checked along with anything else the doc may want to get. This will be the best way to collect diagnostic data to find out IF my THEORY of malabsorption is a factor in my husband's MS.

-Best wishes to all of you.

Keep us posted, Absorption problems may be the key. I am going to try to get into my Primary care dr and see what he says know that nuero's just don't go there.

All info you have on this subj is grateful.

Check out my latest Absorption Chain Flowchart (Red Version 2 May 26, 2008). I added it to the Neuropathy group.
I have a theory that problem in Absorption chain (different for different people) leads to a malnurishment at the CELL level(step beyond blood). I am setting up this flowchart which still is NOT fully complete. Once I get some more work done on it I am going to make a list of the possible "breaks" in the chain and then a 2nd list with the tests to check for these breaks. A third list for what you can do about these breaks.(FYI see my blog on "P Anemia" about 2-3 days ago).
I am going to take all this info with me to a doc that specilizes in absorption. I am going to ask her to do my additional tests along with anything she wants (ie homocysteine level test to determine methyl-B12 level in cytoplasm).

-As always best wishes to all

OK so my husabnd went to GP and last Thursday had LOT of blood draws for the tests I asked of GP. Per her request we are going to a GI doc of whom I have some additional tests I want to get scripted from him when he goes this thursday.
MethylMalonic acid and Homocysteine level (blood draw that show CELL level B12), Intrinsic Factor blocking antibody test, RBC Folate(tests folic acid), Ionized Calcium test, D panel with DOH (see if liver is absorbing D properly), test good gut bacteria with "Beta lacto Globulin", Celiac disease, bad bacteria: Samonella, Shigella and Chalmpobactor. We already got B panel(supposed to include info on Adenosyle-B12,Cyano-B12 and Hydroxo-B12).
I had him stay OFF probiotics and all vitamins for 8 days prior to testing so that the tests would NOT be artifically inflated. Speak to your doctor about what tests, fasting or special conditions (s)he wants you to abide by.

-Good luck to you

I am very curious about the results of last weeks tests and the ones that will be done this next week.
Last night I started my log of absorption break points, tests(if any) that can determine if that is what's wrong in a person, what can be done(if anything) if something is found.

It is not a COMPLETE list, I am NOT a med prof, but it is a starting place to discuss the tests we want done, etc. If you want a copy to discuss with your doc let me know on friday or after(should be done with it by then..or as much as I am going to do).
Right now there are around 30 tests. Excel is 2 pages and too long to place as a photo on neuropathy group.

-Best wishes

How is your hubby taking all this? Does he just go along or is he taking an interest?

My hubby..I love him. His health has never been a priority ..well it is AFTER work, etc

As far as his MS goes I was told by certain family members (in-laws)at dx I was "negative & feeding the disease" because I ..accepted the dx and that it was a degenerative disease & took the approach of lets educate ourselves. His parents said JUST think pos and nothing will happen..maybe in 20 years you'll use a cane. See they "seen" a man with MS walking in their hometown and from "seeing" him determined his cane was his ONLY symptom in 20 years. Then gave this info to my husband as an educated perspective of his future which HE FULLY believed. Someone else in the family told him heavy metals may cause MS and if he got rid of all metals he probably would NOT have MS anymore. It did not. 9 months later he ..was VERY depressed due to 3 relapses in like 9 months. He was concerned the next decade would not see himself walking. I said (just like here) I am NOT a doctor but I had been reading A LOT of info from PhD's and some diet changes and suppliments seem to help (not cure)..so why not try. 2 1/2 years later no full on relapse just a little less function in a few areas that were affected in those first 9 months. He is happy and not depressed

Now knowing the background.
My husband recently told me that he fully expected pos thinking (alone) to help him, then had this hope dashed. Then thought heavy metals might really "be it." He is tired of getting his hopes up to have them dashed.
He gave me crap about the remodel of bathroom being a priority over his health and I lost it. I said I figured getting rid of metals and allergans would help but I never figured it to be root cause. I had made homemade wheatless bread, muffins, pancakes, endless research hours when kids were a napping or down for the night and much more in an effort to help him. I had dealt with multiple issues with jokes that made us both laugh. Other than taking his meds I had NEVER asked him for anything. I am calling in my markers because I HAVE TO KNOW if malabsorption may be a key factor in his MS.
Since that point HE understands I need to know..one way or the other.
He is going to get tested but is not going to get his hopes up until we get the results. I can understand this I just needed him to make "getting tested" a priority so we can investigate this matter more.

-Your thoughts

I think he is lucky to have you. But I smiled at the mental picture I got of you dragging him to the doc and standing there tapping one foot while they took all that blood from him.

By the way, I went to my chiropractor today--I put off seeing him until I can't turn my neck just like I put off all doc appts--and he said, "Have you thought about absorption of nutrients and avoiding wheat and taking milk thistle for cleaning your liver." I told him I had a friend online who was educating me on this. I have added daily servings of Dannon Activa yogurt and sublingual B12. When I see my neuro I will ask her about shots instead. See, I'm trying to do what you say. I'm just glad you're not here to drag me in for all those tests!! :)

In 1994 I was hospitalized for the fourth time for dehydration and malnutrition. They fed me through a tube in nose. (yuck). Which I absorb the feeding ..no problems.

I took the D - Xylose test for mal -absorption. They were no parameters that came with that test. My GP doctor stated it was slightly delayed. I had to search the Internet to find out what my results meant. My GI was suppose to discuss it with me. He didn't.

I finally found out that my tests numbers were lower than normal. There was mal -absorption according to it. However, I think I was dismissed because I didn't have diarrhea.. just vomiting.

You probably have information on this. I still wonder how it come back low but not have diarrhea.

This is so cool you do this for him because at least he knows you are a part of it. My husband gives me my shots.

It is a knowing factor that does ease the mind one way or the other.

your efforts don't only help your husband, we all appreciate this

Della..(I am smirking) no foot tapping. I just physically broke down and cried when he said he didn't know IF he would have time to do the tests...maybe in 3months it's just not a priority..well it is just after work, remodel, etc.

It PISSED me off that I gave a sh*! about him & he needed to do the same for our family. His disease affects us all and I REALLY needed him to do this. That was it, he finally got it and said he would do the tests I needed to find answers to my questions. He is a good guy ( :
Della, seriously if you are curious about this THEORY. Ask for a few tests. What scares me is when people take a bunch of stuff when it might not be your fix. Kinda like the clinical study where estriol helped some MS but NOT others. Some people do NOT have low estriol and you can take it until the cows come home but if this is not your problem it won't help. IF ..IF this theory is correct it will be a tailor solution for each MS patient. At least get a methylmalonic acid & homocysteine test (tests amount of B12 at CELL level).

Don't have results "tiredbunny" will post them though once we get them.

Tab - Thanks

We'll have to see what happens though..but it can't hurt to get checked.

If I have learned one thing about US healthcare its that you have to take your health by the hmmm balls and ask DIRECTED questions and do NOT stop until you find answers.

Again if you want a list of the tests I am asking for as a staring point for your research email me and I'll send it to you.
-Best Wishes to all

OK these are the first round of tests that after looking at my list of "absorption break & tests" that they chose to do.
1) Homocysteine,Methyl MalonicAcid,25 hydrox-Vit B12 (B12 in the cell itself)
2) DEXA
3)CBC(includes Diff/Plt)
4)Comprehensive Metabolic Panel w/Egfr
3) Tsh, 3rd Generation
4)Lipid Panel
5)Folate, Serum
6)Vitamin B12 (blood refrig)
7) Magnesium
8)Celiac Disease
9)Helicobater Pylori lgg Antibody (infection in intestines)
10)Copper
11)Selenium (frozen)
12)Zinc
13)Fatty Acid Profile, Essential S (frozen)
14)Vitamin B1, whole blood (fozen)
15)Vitamin B2 (frozen)
16) Niacin (frozen)
17) Vitamin B6 (frozen)

I will post the results once we get them.

PS Additional testing will be done by absorption specialist in mid July. I'll post this info too.

PS If your doctor gives you any pull back on testing print of the below links and show them to him/her.
This last sentance is backed up by the Mayo 2000 and NIAH 2004 study(links below)
That state that RA is a "prematurely aged immune system"
1a) http://archives.cnn.com/2000/HEALTH/aging/08/02/arthritis.study
1b) http://www.niams.nih.gov/News_and_Events/Spotlight_on_Research/2004/ra_marker.asp

These two links below go over how MS and RA are similar disease processes.
2a) http://www.ncbi.nlm.nih.gov/pubmed/16126966?dopt=Abstract
2b) http://www.medscape.com/viewarticle/538590


READ 2a this is the best one for MS. All these studies point to the current theory that the immune system is OVERactive is WRONG. It gives some credit to malabsorption of vitamins leading to malnurishment of cells that KEEP them from replicating (ie less natural killers cells, etc) and the inablity to REPAIR itself from damage.
Then ask if you can get these tests to determine if malabsorption may be an issue for you.

-Good Luck and best wishes

PS GI specialist was not buying this theory until he read 2a then he perked his eyebrows up and he did some of the additional tests(listed above with GP tests I requested).

Yah, that makes more and more sense. I have had those CD4 and CD whatever, and natural killer cells tests (in the article that got the eyebrow raise from the gi guy) from my immunologist.
He keeps wanting to jab me with IgG. Says it really helps a lot of people with MS, and lots of other auto immune diseases. I will wait and see.

I say do tests and find the problem THEN treat. I really think differnet people with MS will have different absorption problem. There may be certain groupings ie anyone with P Anemia may all have Lack of Intrinsic factors or receptors (see P Anemia blog and my reply for something to talk to your doctor about that may help with this).

I developed a b12 Absorption Cycle Flowchart(incomplete) under the MS/subgroup Neuropathy scroll down to pictures. I also have a list of all the breaks, tests and mitigating factors I came up with to ask the doctor about.

If you look at this chart 1/3 of B12 in blood is unusable to you as human but gut bacteria use it for their metabolism so they are more acitive and help you as a human absorb more. So I think most MS people (IF this theory is right) will have a primary absorption problem and as your B12 reserves go down in liver will have less gut bacteria to absorb nutrients. Not to mention as human age they produce less hormones and digestive enzymes compounding the problem.

So after you find the primary break and mitigate you the doc may also script probiotics and digestive enzymes to also help you absorb more.

I wish a bunch of people at their annual neuro appointments would get tested for absorption problem too so they would have a basis of comaprision down the road for if they are doing better.

-Either way best wishes to all of you

If you want any of these attachements then send me your email address and I will send you info.