Newbie trying to understand CCSVI and StemCell Transplant

[ApVish]

Hi All,

My spouse was diagnosed with a RIS (radiologically isolated syndrome) with several white matter lesions in brain, with negative spinal tap and no lesions in the C-Spine,T-Spine and so far no symptoms (He is 33 yrs old). We went for brain MRI for compeltely different reasons (which turned to be negative as well..so far so good).

So since we were thrown with the news I have been getting familiar with MS and what we can do to help ourselves for a better life etc and this Stem cell transplant information has given us tremendous hope. Thanks for all the info.

Now for my question, I am trying to understand WHY the CCSVI believers are not agreeing with Stem Cell transplant and vice-versa. CCSVI states the MS begins as a vascular issue, but from what I read it never undermines the autoimmune nature of the disease (may be the blood flow problem is creating the auto immune effect over a period of time ???!@#$) , but yeah that would mean, even with the stem cell transplant, one can develop MS progression again may be in 15-20 yrs ? But 15-20 yrs of improved quality of life is still a good treatment than to take daily injections.....

What is that I am missing here ? Is my line of thought right ?

[georgegoss]

Hi All,

My spouse was diagnosed with a RIS (radiologically isolated syndrome) with several white matter lesions in brain, with negative spinal tap and no lesions in the C-Spine,T-Spine and so far no symptoms (He is 33 yrs old). We went for brain MRI for compeltely different reasons (which turned to be negative as well..so far so good).

So since we were thrown with the news I have been getting familiar with MS and what we can do to help ourselves for a better life etc and this Stem cell transplant information has given us tremendous hope. Thanks for all the info.

Now for my question, I am trying to understand WHY the CCSVI believers are not agreeing with Stem Cell transplant and vice-versa. CCSVI states the MS begins as a vascular issue, but from what I read it never undermines the autoimmune nature of the disease (may be the blood flow problem is creating the auto immune effect over a period of time ???!@#$) , but yeah that would mean, even with the stem cell transplant, one can develop MS progression again may be in 15-20 yrs ? But 15-20 yrs of improved quality of life is still a good treatment than to take daily injections.....

What is that I am missing here ? Is my line of thought right ?

Hi ApVish,

Sorry to hear about your Spouse's medical difficulties. On the other hand, an MRI with no enhancing lesion activity bodes well for not having MS ("official" MS diagnosis includes both clinical manifestations + positive MRI scan). I would never wish MS on anyone else and hope he doesn't develop it.

CCSVI vs. HSCT. From some perspective it sure does seem that sometimes the situation is slowly evolving that way. As for me personally, I would never criticize any individual for seeking CCSVI treatment even though I think the treatment itself will eventually be disproven to benefit MS patients because there is zero scientifically-valid evidence it is a cause (or cure) of MS. I don't want to start a war of words and I only proceed based on the data. But there are others that think differently about it, which is fine. To each, their own.

http://themscure.blogspot.com/2010/06/ccsvi-hoax.html

As for HSCT, it is already so far along in the valid scientific evidentiary confirmation process that from a scientific perspective those saying it is an ineffective treatment is like saying that the ocean has no water in it. A clearly false (and uneducated) position to stand on that does not reflect the facts.

http://themscure.blogspot.com/2010/06/s ... rence.html

But you do bring an excellent question regarding how long might the curative aspects of HSCT last. It could be a cure for lifetime, or possibly not. The final answer is not yet known because there is currently only useful patient efficacy data out to just past a decade following treatment. What is currently known is that as of today, for all people that had their underlying MS disease activity stopped via HSCT, it is still stopped today. Once HSCT has stopped the MS, no patient has relapsed into ongoing progression. So how will we know what happens 15 or 20 years following HSCT treatment for these same people? We'll see in another 5-10 years. Only time will tell for certain. I'm betting on lifetime cure success. At this point I can only hope I'm correct.

To go back to your original question of "What is that I am missing here ?" You don't seem to be missing anything differently than anyone else. There are still so many open questions in the world of MS. That's why you have to guage the data that does exist and then make your own decision, regardless of what that is. I, for one won't be ridiculing you, regardless of your actual course.

My sincere very best wishes to you and your spouse's best health!

- George

[ApVish]

Thanks for the insight George, I have read your blog top to bottom

I sincerely hope you are correct about the progression stopping for lifetime. HSCT definitely gives people like us lot of confidence that there is something we could try to stop the disease progression.

I have another question for you, since you seem to have done a lot of research on this HSCT, you might have some insight into this question.

In MSWorld forum, there was a lady who said the HSCT can affect heart. Is that true ? I have researched on it and couldn't find any correlation on the claim. The reason I was worried is that my spouse has a dilatation on the aortic root ( has been there since he was a kid and not progressing and the doctors have said it might just stay like that for lifetime or might need some intervention if it progresses).

Have you done any research on HSCT and affecting heart claim ?

[georgegoss]

Thanks for the insight George, I have read your blog top to bottom

I sincerely hope you are correct about the progression stopping for lifetime. HSCT definitely gives people like us lot of confidence that there is something we could try to stop the disease progression.

I have another question for you, since you seem to have done a lot of research on this HSCT, you might have some insight into this question.

In MSWorld forum, there was a lady who said the HSCT can affect heart. Is that true ? I have researched on it and couldn't find any correlation on the claim. The reason I was worried is that my spouse has a dilatation on the aortic root ( has been there since he was a kid and not progressing and the doctors have said it might just stay like that for lifetime or might need some intervention if it progresses).

Have you done any research on HSCT and affecting heart claim ?

Hi ApVish,

That's amazing you would read my entire blog! I'm sure I'm an exceptionally dry & boring writer so I am much impressed with your fortitude. If I were so empowered I would give you a medal.

Another excellent question regarding heart effects that I don't often hear asked about.

So when talking about autologous HSCT for MS patients, actually it's not "really" a stem cell procedure (because the patient is just getting their own stems cells back to re-constitute the bone marrow) and perhaps it is good to think about this as a "chemotherapy treatment." (Actually it is the chemotherapy that is curing the patient of MS disease progression via in-vivo T-cell ablation, not the stem cells specifically). It turns out that several of the chemo drugs (especially alkylating agents) are quite hard on the pulmonary valves of the heart. So prior to the procedure everyone gets their heart and pulmonary valves checked out beforehand via EKG and doppler sonogram to verify that the heart is strong enough to tolerate the HSCT procedure with chemo. So yes, it's true that there are some heart conditions that would disqualify some people from HSCT treatment due to the risk of severe heart valve damage during chemo. Luckily most people with normal heart function can tolerate the HSCT chemo & procedure without undue risk. But if someone is determined to have excessive risk, then they should forgo treatment or consider an alternate therapy. But the only way to actually determine this is to have the patient specifically checked out. It's possible that his heart vales are in good-"enough" condition.

I hope this is not discouraging. But it is important to know the facts associated with the risks of HSCT treatment.

- George

[ApVish]

Thanks again for your response. I am sincerely saying that your blog is awesome and serious inspiration.

I think we are good o the pulmonary valve. The dilation is only on the aortic root in my husband's case. and to all Doctor's surprise has stayed the same for 20+ yrs. They have been prepping him with the news that it might become bad within the next 5 yrs since he was 13 yrs old...but they are stumped now and one doc agreed, he might just stay the same for lifetime and may be just an anomaly.

Also interestingly, EKG and doppler alone might not pick up all the abnormalities in the heart. (We have been really exposed to heart testing for 10+ yrs, so though i am not a Doc, I seem to have some experience ), so if they are testing only EKG and doppler to see heart condition, then I can understand they are worried only about the overall health of the heart.

But again sometimes I think I am thinking way too ahead , but being an OCD personality I need to have plan of action if things gets bad ..

Thanks again George

[Algis]

Pardon me if it is somehow explained here above; but I am really tired of reading that supposed opposition HSCT / CCSVI so here is my tuppence on that:

I do not see why it should be mutually exclusive. I; for myself (me; I and only I) hope to have both; as I can read positive from both procedures I am sure they can be complementary. As soon as they are available here; I will do (anyone that come available first).

I would not travel abroad for any of them in no case as I want to have a local follow-up / backup plan.

Hope it helps; be well

[Asher]

@a

[Cece]

There was recently a presentation about CCSVI and stem cells used in combination by the doctors in Bulgaria. CCSVI was treated first and stem cells injected arterially the next day. The arterial injection (through a catheter in the carotid) means that the delivery goes to the brain. This may be better than intravenously, where the stem cells can end up filtered by the lungs, or intrathecally in the spinal fluid.

I don't know enough about stem cells. Until they're covered by my insurance company, it's not an option I'm pursuing. CCSVI treatment however was covered by my insurance. ;)

[ApVish]

Doing CCSVI prior to Stem cell transplant makes sense. But without chemo we are again missing one piece (just my opinion).

I totally understand about the cost of the procedure. I do hope that it gets approved before this decade. One can only hope!!!

[Lyon]

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