you are a smart cookie ma'am

if different people have a different absorption problem that would probably explain while some meds are miracles for some people and disastrous for others...

also i like your approach about being realistic rather than creating "false hope" people were feeding me the false hope BS and i got severely depressed when i ended up in the hospital in a wheelchair for a week...
i was so upset...From then on i told everyone to let me think how i think that i am realistic not pessimistic and that praying was great but i don't expect it to HEAL me and positive thinking is good but i don't expect that to heal me either...i just take it as it is i've accepted it...It's kinda sad when everyone but the patient is still in denial though...
your husbands' family are the ones feeding the fire! not you! educating yourself on MS is not only empowering but it helps you understand the disease better and prepare for the worst (god forbid)

JR-Reply 17
YES EXACTLY!!

People would have to get tested to find their breaks.
I had my husband stay off vitamins and probiotics for a little over a week so his numbers did not come back artifically inflated..just want the truth.

Yeah the false hope thing SUCKS!! I'll be posting results..one way or the other in the next week. No matter what additional tests will be done by absorption specialist mid July. Then we will wait for those results too. I KNOW she has further tests. I really want to see her becuase I am NOT a doctor and I wanted a medical prof to do ALL necessary tests to determine if this is a factor for my husband. She has a sister with RA so this is a mission for her too.

If you want to see something I am proud of see the B12 absorption cycle Flowchart under Neuropathy subgroup. Scroll to bottom and you'll see it under Photos. I made this thing out of like 20 some medical abstracts. Could not find anyone who has a big picture view of absorption cycle .. not even physiology websites at Universities. So I said Shit if you want something done do it yourself and started reading. If you want any of the medical extracts let me know. I kept a lot of the links (not all).

If anyone gets tested then:
1.) go to a doctor..dahhh
2.) Print out the tests I wanted to get for my husband (send me your email adress and I can send this to you)+ links like 2a about how clinical studies SHOW MS is "Aged" weak. Helps doctors look at MS from a different angle.
3.) If you get pull back just say you want to get tested..if only for piece of mind. Since they do not know what causes MS it should not hurt to do diagnostic tests to determine IF this is an issue.
4.) Go by any special guidelines for the tests ie no alcohol or vitamins (Probiotics)maybe for a week beforehand
5.) PLEASE post results

I know I have all your info but I want to see the pictures I was just looking and I couldn,t find the Nueropathy sub group to look at the pictures. how do we get there.

LOVE YOU!!!!! This energizes me to keep in touch with all this stuff but honestly I can't keep up with you, you run me tire--ha ha. YOUr AMAZING. You should create your own group that you post all your stuff on, sf-1019, absorption, ect. your smart and love all the info.

tab

my doc denies everything i ask for she says my insurance doesn't cover "screening" tests...

Well IF..IF we find anything, treat it and it IMPROVES my husband or my aunts condition then I will post. If people start getting tested we'll have multiple data points. Then you might have more crediablity. - Good Luck to you.

My apologies the neurology group is still active for me under "My Group" left side but does not appear on the Groups list in the upper right..don't know why.
Della gave me rights to add photos in the Alternative group and you can see my INcomplete big picture of B12 Absorption cycle.

Your thoughts?

i hope your husband knows what a lucky man he is! #1 you're staying with him. #2 you "get it" about m.s. #3 you care enough to try to do everything possible to make him better. that's like a spousal winning lotto ticket to someone with m.s.
i found the group but could not find your chart.

Over this last month I have had quite a number of people ask me questions about this THEORY of mine and many thank me for sharing information. Just recently someone said this again. I responded with the note below and thought really I need to extend this letter to all of YOU who HELPED me by sharing your information.
Letting me know subgroups of those with MS have P Anemia(Lack B12), Other Anemias(lack of folic acid or iron), Osteoperosis (lack Calcium, VitD, phosphorous), ITP (LOW platlet count), numerous people with B12 and/or Vit D deficiencies. Plus, your lives in general.
THANK YOU

--The note I want to share--
You know it was all of you sharing out here that helped me.
See I can do research but I myself don't know more than what my husband tells me is an issue with him. I have been able to mitigate many issues with food and suppliments ...others we have just learned to live with.
It was reading how many of you are vit D, B12 deficient & glueten intolerance(even if it is NOT celiac disease) even after eating very healthy that helped me come up with this theory. Actually it was a post on Montel where everyone bitched about how people would come up and say if you just eat what Montel does and take some special herb you would not have MS. The lady with MS said you know I DO eat well and if there was some herb don't you think I would take it. I thought you know god D@($@! it we eat right too and I do not have MS but he does. There has to be something where he is just not absorbing it for him to still have deficiencies. It goes to why estriol(needed for B12 absorption) works on some but not others. Why some meds work wonders while other hate them. It also explains the 3-4 studies (MAYO, NIAH, Gov) that state MS and RA are "aged" weak immune systems. THESE PROVEN studies state(MAYO) that current immune inhibitors might be"missing boat" Seems like even if you don't believe my theory that they would be looking at WHY the immune system is "aged" vs continuing on the path of the very old theory the immune system is attacking itself of which I have yet to see multiple studies that come to that conclusion.
On that note HAVE YOU ever found ANY studies that show autoimmune diseases of MS or RA are OVERactive. I don't mean theory, I mean REAL studies done that after looking at data came to this conclusion????

This THEORY is far from proven but it is the SHARING of data by everyone out here that is a big help to ..well everyone. If we keep putting our heads together we can try to find answers.

-Best Wishes ..to all of you

I was talking to someone and she was amazed how the absorption process is so complex. I said yeah probably multiple breaks. If you have less good gut bacteria you NOT only have less absorption you have less B12. See you not only ingest B12 in foods like eggs, meat not on the raw side, liver, milk you also GET B12 from your gut bacteria!!!

Wierd but true.. ( :

Please POST if you get these tests done.

-Thank you

Ok if anyone wants the attachments then just send me your email address.
The first attachment is a pic made in Paint that goes over the B12 absorption Flowchart(INcomplete) but a lot of it is there.
This Flowchart is 1 page so I could post it. It is located on "Alternative Group" (Founder Della) it is the ONLY Photo in this group.

Then once I made this it gave me a good reference to make a list of the possible breaks, then looked up possible tests for the breaks and mitigating factors (if I could find any). This second attachment is a spreadsheet. I use OpenOffice.org text(word), spreadsheets(excel), presentations(powerpoint) and access because they are ALL FREE unlike MS Office that is $500 withOUT access database. This software is reliable, I have been using it for about 4 years and in the last 9 months was on PC Worlds list of best freeware.

You should be able to open it in excel but if you have problems could download from
http://openoffice.bouncer.osuosl.org/?&product=OpenOffice.org&os=winwjre&lang=en-US&version=2.4.0
(If you can it is nice to donate $15.)

If you want me to send info to email ..then again just send that address. BTW We go in for more testing by an actual doctor that specializes in absorption late in July. I will post more info then.

-Best Wishes to you ( :

so can I take YOU to my doc's appt.? your knowledge would prove to them to do more than the TEXT book things. HA HA.

My husband was impressed you use open office. He use to work for NOvell who promotes it as well. He says it is better than THAT OTHER THING. But you don't have to download to access your info you just have to right click and open and THE OTHER PROGRAM will transfer it. But The new versions of open office stuff are great and easy to work with. I have both for communication purposes.

An idea: when people start getting these test back, (I hope I am not the only one pursing this and I know Insr and docs stand in the way) but maybe we should create another group that people can add their results on a chart so it can be read and compared easily and also easier for others to take to their docs to convince. I could do that when and IF I get my stuff done. What do you think?

Tab

OK part of the absorption cycle flowchart I posted states you need other vitamins ie Folic Acid, Calcium, Vit D(not to mention other B complex vitamins B2, B5, B6..).
I am trying to work on the absorption process of Vit D(seems to be less info ie medical extracts on this topic). Seems like these 2 vitamins are the ones most people out here say they have issues with.

Good Link to info is below
http://ods.od.nih.gov/factsheets/vitamind.asp
Low D risk in following people: 1.Obese, 2.Older Adults 3.dark skin, 4.limited sun exposure &
5.People with Fat MALabsorption ie pancreatic enzyme deficiency, Crohns, Cystic Fibrosis, celiac disease, liver disease or those who have had intestines taken out.

+ Steriods (ie Prednisone) reduce inflammation
However they also REDUCE calcium absorption(EP-calcium required for B12 absorption) and impair Vit D metabolism.
Among other things increases your risk for osteporosis.

EP- So if you take steriods and IF you already have an absorption problem (ie with B12 or Vit D)
THEN the absorption problem will be compounded by the absorption problems of steriods.
Might explain why people have issues after taking steroids.
I want to point out I do NOT think steriods are evil. They are NOT.. some people
HAVE to have them (ie smokers who need to breath) or they will die.
HOWEVER, I believe that due to all the known issues with steriods (see below link)
that it might be prudent to talk to your doctor about using fish oil(we take 6 a day)
and Alpha Lipotic Acid (ALA-what your body naturally produces to reduce inflammation).
Studies of ALA on RA in Oregon Univ show reduction in inflammation (600mg 3-4xweek)
We take about 450mg 2-3x week since I don't want to overdose. PLEASE see your doc about anything you want to take to reduce inflammation, etc

Again I will post our first 1/2 of test results when we get them..soon.
http://vasculitis.med.jhu.edu/treatments/prednisone.html
Prednisone Known side effects
Weight gain, glucose(sugar)intolerence, Hypertension(High BP), Increase infections, bone thinning, Bruising(EP-iron or folic acid absorption impairment??), mood swings, insomnia, cataracts, acne, etc..

You see per gov studies that steriods reduce absorption/metabolism of Calcium(needed for B12 absorp) and vit D. Then John hopkins says that seriods cause side effects like: bone thinning, weight gain, easy brusing, mood swings, insomnia, glucose(sugar)intolerance, etc

How many people with MS have these symptoms even before steriods..seems like quite a few. Is it that far of a stretch that maybe a contributing factor of MS MIGHT be an absorption problem that leads to malnurishment at the CELL level. This lack of nutrients keep body from replicating and repairing itself properly. It is a THEORY that I ahve not Blown any holes in so far so we are pursuing testing to FIND OUT IF it might be contributing factor in my husbands MS.

These twiches may be MS..would not surprise me. My question is part of the MS that leads to all these symptoms in part due to malabsorption issue??? Seems very plausible.

-Best Wishes to all