The Overlooked Other Aspect of CCSVI Treatment.

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby shye » Sun Jul 11, 2010 5:26 pm

I think each State has different rules on donating blood. In NY, if you look at the Blood center's website, one of reasons can't give blood is if had an MS relapse within past two weeks--I think that was the time span. Yet when actually go to donate, they have you fill out a form--and most of the things mentioned on their site are not mentioned at all, including MS--there are few restrictions.
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Re: The Overlooked Other Aspect of CCSVI Treatment.

Postby JoyIsMyStrength » Sun Jul 11, 2010 7:11 pm

CureIous wrote:p.s. here's an oft used link: http://ms.about.com/od/livingwellwithms ... _blood.htm


Very helpful, Mark. Thanks. :)

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Postby Blaze » Mon Jul 12, 2010 4:43 am

I'm stunned people are able to donate blood. I had donated for years, but after my diagnosis of MS (26 years ago), I was told I was on their "permanently deferred list" and would no longer be permitted to donate.

Strange how something like that differs so dramatically in different places. M
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Postby shye » Mon Jul 12, 2010 5:05 am

are you in the States Blaze? If so, try a blood donation center run by the American Red Cross--they don't exclude MS.
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Postby MS_HOPE » Mon Jul 12, 2010 8:07 am

Shye said: "Had one phlebotomy, and felt amazingly better. .... the blood donation of a pint gave me energy I have not had for years (is waning as the time goes by--been a bit over a month--but still is a more even energy than before). And as I say, I will donate again, and see if get same great response.
Still doing research to see why got immediate reaction--since immediately after the blood donation, your WBC, RBC, Hematocrit and hemoglobin all go down (the blood panel takes a few weeks to start going down)--and you would think you would have less energy, not more."


Shye, just a thought. (I'm not a medical person and lack the depth of knowledge of others in this forum.) The most immediate effects of CCSVI treatment often include diminished fatigue, and of course correcting the stenoses eliminates blood reflux into the brain and/or spinal cord. I'm wondering if perhaps decreasing the VOLUME of circulating blood might serve to reduce the reflux, and thus reduce fatigue. Thoughts, anyone?

Shye, please let us know how it goes after your second blood donation!
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Postby euphoniaa » Mon Jul 12, 2010 8:57 am

shye wrote:are you in the States Blaze? If so, try a blood donation center run by the American Red Cross--they don't exclude MS.


When I called MY local Red Cross site, they told me that MS would definitely exclude me.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby Donnchadh » Mon Jul 12, 2010 9:18 am

Blaze wrote:I'm stunned people are able to donate blood. I had donated for years, but after my diagnosis of MS (26 years ago), I was told I was on their "permanently deferred list" and would no longer be permitted to donate.

Strange how something like that differs so dramatically in different places. M


A couple of thoughts which may be applicable....26 years ago one of the competing medical explanations was that "MS" was the result of an infection. Perhaps they were just being cautious?

Perhaps some virus or bacteria could cause neurological damage; I don't want to completely exclude it as a possible agent in some (probably very limited) cases.

However, I personally am convinced that "MS" is primarily a vascular disorder and is definitely not contagious. Inheritable, yes but not something transmittable via blood donations.

The blood center I go to does not ask per se if you have "MS" but they DO list specific "MS" phrama drugs as disqualifying. As mentioned previously I have never taken any of the neuro's snake oil remedies.

I have just made my fourth donation; and it's on a eight week cycle. They test for a lot of possible conditions (HIV, STD's, hepatitis, etc.) and
seem quite eager to have me keep coming back.

I usually feel better a day or two after the donation (relief from fatigue being the chief improvement) and this gradually wears off as the 8 week cycle progresses.

That to me, at least, is the clue that iron deposition is the main culprit in initiating the cascade of symptoms called "MS."

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Postby Donnchadh » Mon Jul 12, 2010 9:22 am

euphoniaa wrote:
shye wrote:are you in the States Blaze? If so, try a blood donation center run by the American Red Cross--they don't exclude MS.


When I called MY local Red Cross site, they told me that MS would definitely exclude me.


You could ask your GP for a order for a blood, but it would entail some cost this the drawn blood would be discarded and not be considered a donation. But it would be worth a trial to see if it helps.

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Postby shye » Mon Jul 12, 2010 1:42 pm

Euphoniaa and Blaze,
please read the info curIous posted

http://ms.about.com/od/livingwellwithms ... _blood.htm ---it states:

However, after a little digging, I found the latest Blood Donation Eligibility Guidelines, which were released on May 24, 2007. Since they did not mention MS as an exclusionary factor for being a blood donor, I called the National Headquarters of the American Red Cross (1-800-GIVE-LIFE) to confirm that MS had been taken off the list. I was told that people with MS could now donate blood if they met all of the other criteria.


I got my blood drawn at the NYBlood Bank, but they are under the auspices of the American Red Cross--and as I said, they do not exclude MS>
Last edited by shye on Mon Jul 12, 2010 1:51 pm, edited 1 time in total.
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Postby shye » Mon Jul 12, 2010 1:46 pm

Donnchadh
just curious, have you had your bloods checked since donating? If so, what are the results?? Were you high in iron parameters when you started? what are these now?
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Postby Daisy3 » Mon Jul 12, 2010 1:47 pm

I am going to be slightly controversial and just say what I am thinking..if we don't really know what is causing MS, should we really be donating blood? The last thing we want is for someone else to become ill as a result of it.

I just think that there are too many negatives here for people to rush off and donate blood when they have a condition that so far has not really been understood.
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Postby euphoniaa » Mon Jul 12, 2010 1:49 pm

shye wrote:Euphoniaa and Blaze,
please read the info curIous posted

http://ms.about.com/od/livingwellwithms ... _blood.htm ---it states:

However, after a little digging, I found the latest Blood Donation Eligibility Guidelines, which were released on May 24, 2007. Since they did not mention MS as an exclusionary factor for being a blood donor, I called the National Headquarters of the American Red Cross (1-800-GIVE-LIFE) to confirm that MS had been taken off the list. I was told that people with MS could now donate blood if they met all of the other criteria.

And here is what it says in the link above:

Can I donate blood if I have multiple sclerosis?
People with multiple sclerosis (MS) are now eligible to donate blood, according to the Blood Donation Eligibility Guidelines of the Red Cross, which were revised in May 2007. However, it is still possible that some blood banks have their own rules and will not allow people with MS to donate blood.


And MY local office has decided that I cannot donate. It's probably worth a try to call them and quote the rules, although I asked them since the May 2007 revision. That's why I called them in the first place.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby shye » Mon Jul 12, 2010 1:55 pm

Euphoniaa
Re
Can I donate blood if I have multiple sclerosis?
People with multiple sclerosis (MS) are now eligible to donate blood, according to the Blood Donation Eligibility Guidelines of the Red Cross, which were revised in May 2007. However, it is still possible that some blood banks have their own rules and will not allow people with MS to donate blood.


In the context, I took that to mean that other blood banks (such as private hospitals) might not allow it.

I would be very assertive in quoting their own Guidlines to them.
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Postby shye » Mon Jul 12, 2010 1:58 pm

Daisy-
it is up to the officials of the blood donation organizations to decide what consitutes a threat as far as blood donations are concerned--not for us as laypersons to make that call.
And they largest organization, the American Red Cross, has ruled MS is not an exculsionary disease.
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Postby Cece » Mon Jul 12, 2010 2:26 pm

MS_HOPE wrote:Shye, just a thought. (I'm not a medical person and lack the depth of knowledge of others in this forum.) The most immediate effects of CCSVI treatment often include diminished fatigue, and of course correcting the stenoses eliminates blood reflux into the brain and/or spinal cord. I'm wondering if perhaps decreasing the VOLUME of circulating blood might serve to reduce the reflux, and thus reduce fatigue. Thoughts, anyone?

Interesting, I had not thought of it as possibly a blood volume issue.

What else reduces blood volume? Dehydration?

There was some unrelated research that I turned up that suggested that holding your breath reduces reflux in the brain. (I can find my link on this if anyone has an interest.)
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