This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi to all,

Is there any clinical evidence as to whether or not someone with MS should be an organ donor, participate in the bone marrow donation program, or donate blood.

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Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.

Good question Tim.

That one came up less than a year ago and my crappy memory won't let me recall the results. It seemed that there were organizations (I don't remember which organizations or which countries) which do restrict donations from people with MS.

One of my main interests is the etiology and history of MS research and I've never seen ANY realistic reason to believe that MS is in any way shape or form can be transferred from one person to another.

Of course, tell that to your Red Cross representative and they're going to say "Bob WHO??" as they pry to cookie and juice from your fingers!

Bob

If you needed some blood or an organ, would you want it donated by someone with a chronic, progressive, incurable, debilitating condition with no cure in sight?

gwa

That may be one of the reasons: if I donated something and the person then became ill, if they knew that the donor had had MS, it could be used to claim damages.

Incidentally, before I was diagnosed I gave gallons of blood and I have a very rare blood group. I knew I had MS for years before diagnosis, so what does that make me?

Sarah

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An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Not only claim damages, Sarah, but wouldn't it be a massive pointer for research: I mean, if people received blood or organs from MS patients, and then went on to develop the disease in disproportionate numbers, wouldn't that indicate a blood borne agent?
So an undesirable thing, like discovering MS was transferable between people, might give a welcome kick in the right direction for research.
I used to give blood too until I was diagnosed, when the nurse said to me, " I think perhaps you'd better not". I wish there was a way of finding out if the people who received my blood went on to develop MS…

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Dom

Maybe, but certain infections, like Cpn, are present in the blood but are only passed on by sneezing and such like, plus you have to have the genetic propensity to develop MS, whatever you catch. So it isn't quite that simple, would that it were!

Sarah

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An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

In France, you cannot donate your blood when you have MS. As no one knows what causes MS, it seems quite logical. My girlfriend's neuro didn't know anything about MS and organ donation. But french people often don't even know they may record their will to donate organs before their death. (prehistoric french mentality and health politics, one more time...)

This subject interests me greatly because I have always believed in organ donation and that I would be an organ donor if the unfortunate situation presented itself. I have MS but I still think that there are many people who are gravely ill who would take the chance of contracting an incurable but not deadly disease rather than to die. If the information is disclosed the recipient would have the choice. My body is in good shape and I am healthy besides the MS. It would seem a waste since there are not enough people to donate as it is. I was told that I shouldn't give blood but I'd have to think that organs should be treated differently.

Sarah,
I see what you're saying about infections like Cpn, I just meant that if MS was found to be transmissible via blood products, it would lead research in a whole new direction – just a " what if" question,

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Dom

Yes, Dom, I agree. I think I was just trying to make myself feel OK about all the blood I gave whilst knowing that I had MS. I shouldn't really post things so late at night!

Sarah

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An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

One thing that struck me is that is may be the drug regime one's on rather than the MS that might prevent someone from donating eg would a patient with a long record of steroid use be the best donor for a liver transplant?
Muu

Me again!
I've just had a look at the Uk Blood Transfusion Service site. They don't have an absolute bar for people with MS but do flag up that people that have "a serious illness" (ms?) or " are awaiting tests" may not be able to donate - without more info. Looking at the site there are numerous bars so I don't think us msers should take it too personally.
Muu

Hi to all,

I agree that if you have MS and know that it might be transmitted to the recipient of one of your organs, bone marrow, or blood, you should not donate. That was not my original question.



I believe one of the questions is -- does the memory white blood cells (WBCs) from a person with MS have the capability of replicating themselves and also the ability to produce MRTCs within the new host.

Question number 2 is -- does the bone marrow from a person with MS produce WBCs that will make MRTCs. It seems that the current theory is that the WBCs get triggered by some disease and then mistake myelin as that disease and start to attack it.

Question number 2 is further complicated by results and theories from the cyclophosphamide trials at Stony Brook. That is, once the people in the trial had there immune system wiped clean, the MRTC producing WBCs did not return. Maybe they just had not yet been re-triggered.

I don't think I am as concerned with organ donation as I am with blood and marrow. There are only about 10 to 20 MRTCs per one million T-cells, so the chance that there are enough of them in a donated organ to cause a problem is slight.

Sooooooooooooooooooo, is there any clinical data that would suggest that a person with MS should not be an organ donor, participate in a bone marrow donation program, or donate blood. In the absence of clinical data either for or against, I guess it is best to error on the side of caution and not donate. I would still ponder organ donation from a risk verses benefit factor.

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Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.

Good questions Tim, thanks for clarifying.

I'm thinking, and you know how time consuming.........and DANGEROUS that is!

I'm reading McAlpine's right now and last night studies in that regard were specifically mentioned (not in any way conclusive) but right now it's too late and my eyes are too tired to re-find that info.

I get the idea that situation hasn't been been studied much, and it's understandable why not. Conclusive evidence would require human studies which would be morally reprehensible. Some of the information I read last night was based on animals studies and some was of a German doctor during WWII.

Bob

I believe the asnwer to this question is yes. Adoptive transfer has been used in animal studies to take MRTCs from one animal with EAE and put them into a naive animal which then goes on to develop EAE.

From the mult-slerosis.org MS glossary:

In addition, here's a link to a Google search for "adoptive transfer" and "multiple sclerosis".

More info can also be found by searching on PubMed. The same search terms as used above with Google produced 220 abstracts with 20 review papers.

NHE