Wednesday, June 1, 2011

CCSVI – Who Benefits Most?

untitled“Be careful of reading health books; you may die of a misprint.” Mark Twain

As most of you know, I've twice undergone treatment for a condition called CCSVI, which is reported to be associated with multiple sclerosis. That's the thing though. Whenever something is reported about multiple sclerosis it almost certainly has nothing to do with me.

“But wait, Mitch, it says right in your blog that you have multiple sclerosis. What gives?”

I have a relatively rare form of multiple sclerosis (10%) called Primary Progressive MS (PPMS, or PP). Almost everyone else is initially diagnosed with the most common form called Relapsing Remitting MS (RRMS, or RR). Most of what you read in the media pertains to RR, and unfortunately, there's never been much to report about PP. Very few trials are underway specific to my type of MS, and every trial ever conducted for PPMS has failed, including the one I participated in. Even though RR has a handful, and now almost two handfuls, of FDA approved disease modifying treatments*, PP has exactly zero approved treatments. In fact, some have argued that PPMS is actually a separate disease from RRMS. I think that those people may be on to something.

Maybe CCSVI treatment will be different. Possibly, hopefully, CCSVI treatment will help not only the RR folks, but the PP folks too. But I'm beginning to doubt it. First, I’ve realized no benefit from the treatment myself. Second, a new study has been published which correlates certain personal attributes with the success rate for CCSVI treatment. The study was small, and we are still early in the CCSVI investigative process (which will take years). The results, however, speak to me so clearly that I thought I would share them with you. Here's a link to the study.

CCSVI treatment works best for:

1. Females – I am a male
2. Relapsing Remitting type of MS – I have the Primary Progressive type
3. Lower baseline EDSS- I have high baseline EDSS**
4. Younger age – I will be 48 this year
5. Short disease duration – I'm approaching the 10th anniversary of my diagnosis

If you are keeping score, that’s zero out of five. I am at the extreme end of the spectrum regarding items 1, 2, and 3. I am simply higher than average on items 4 (compared to people who are 58 or 68 years old for example) and 5 (compared to people who have had MS for 20 or 30 years for example).

Again, it is premature to interpret these tendencies as scientific certainty. Much more research is needed. Based on this first study of its type, however, I have an uneasy feeling that CCSVI will be more of the same. PPMS will not be invited to the party.

I haven't officially declared my second CCSVI treatment to be a failure. It will take six months or so to make a clear assessment. For me that will be in September. But I must tell you, it's not looking promising on the first day of June.

To be clear, I still consider CCSVI to be a major finding, perhaps the most significant discovery ever, regarding MS. To learn more, please visit the CCSVI Alliance webpage.

At the risk of sounding like a pessimist, which I am not, I must caution you that if one day you wake up and see a newspaper headline that reads something like:

"Cause of MS Determined – Cure to be Made Available by End of Year,”

it almost certainly won't apply to me. So resist the urge to send me congratulatory emails, flower arrangements, or bottles of expensive champagne until you read the story and see if PPMS is even mentioned. On second thought, go ahead and send a bottle of bubbly either way.



*The FDA approved disease modifying treatments for RRMS are nothing to write home about. Most of them involve uncomfortable injections or infusions. All come with a host of nasty side effects ranging from flulike symptoms to risk of death (although rare). All are extremely expensive, on the order of $25,000-$50,000 per year. Their success rate at reducing relapses varies greatly from patient to patient, and they show little long-term efficacy regarding disease progression. Nevertheless, I remain jealous.


**EDSS is a quantitative measurement of disability in MS patients. The scale goes from 0 to 10, where 0 is no disability and 10 is death due to MS. My EDSS is approximately 8.3. Fear not; I have no plans to go any higher than 9.9.

5 comments:

  1. Mitch, I, too, had high hopes for the CCSVI treatments, but held off doing it without more 'proof.' Now, I'm not even thinking about it. My neurologist never hung a title on me -- I just figured I was RRMS. However, I've never had exacerbations, never relapsed, and never went into remission. I was on 2 different DMDs (Avonex and Copaxone) until I realized they were doing nothing. I really believe I'm PPMS, and as you said, no treatments are available. So, I'm pretty much riding up that proverbial creek behind you, and no oars are in sight!
    Peace,
    Muff

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  2. I was like most others diagnosed with RR, but now it's obvious I've progressed to something else. I watched the video where at the end you show yourself prior to MS, I like the way you refer to it as healthier times. I can think more along those lines. It would fair better for all.
    Nicole

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  3. I also have the "rare" form of MS. Progressive,relapsing. Only by searching have I ever read anything on the subject. Though I am now 45 and have had MS since i was a young teenager. Will someone please publish some promissing new breakthru out there for us?!!

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  4. Hi Mitch,
    Thanks for this post, I too am pissed off no one seems interested in people with PPMS.
    No treatments, research nothing.
    On the other hands I am glad I am not part of the pharma drug dealers target group.
    And get drugs that seem to do little good except make alot of money and keep people hooked for life.
    Love,
    Herrad

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  5. Thanks for the post. Regarding CCSVI: it is all so obscure and seems that all available data of Liberation treatment outcome has been manipulated in one way or another. Everything depends who you're listening to. Even CCSVI-Tracking couldn't be trusted, see http://insider-ccsvi.livejournal.com/3302.html. When the official registry of CCSVI-treated will be founded?

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