This Is MS Multiple Sclerosis Community: Knowledge & Support

I've posted this in other forums, but I really think it warrants thought and consideration.

Let's say there is NO DIFFERENCE in types of MS (because after all, isn't it all progressive?).

Again let's just consider CCSVI = VEIN STENOSIS + TIME


For the CCSVI theory, the types of MS are really just the veins involved.

RRMS (as EnjoyingTheRide said) affects the brain. So obviously jugular occlusion per CCSVI theory but in RRMS there can also be spinal lesions (brain stem is the spine) so still jugulars though because that affects the vertebral veins.

SPMS could involve both the jugulars AND/OR azygous as SPMS is really just RRMS + more TIME.

PPMS could involve the jugulars AND/OR azygous (as EnjoyingTheRide said since lesions are mostly spinal).

HOWEVER, isn't it the same process really? A breach of the BBB causing the same process (immune system attacking blood/iron that shouldn't be there). The only difference is where it happened (which vein was stenosed).

There is NO difference in SPMS/RRMS/RPMS/PPMS as far as a "mysterious" bacteria or virus ... it's just veinous stenosis.

BUT

Dr. Zamboni found stenosis in 86% of his cohort in the AZYGOUS ... and 91% of his cohort had stenosis in the JUGULARS.

Those numbers don't make sense if PPMS/RRMS/SPMS/RPMS are to be believed.

BECAUSE PPMS (azygous) only affects 10-15% of the MS population. So how could 86% of the population have stenosis of the vein we all suspect to be involved in PPMS?

It doesn't add up. The only thing that makes sense is "TIME" and "SEVERITY OF STENOSIS" being the key for different types of MS classifications.

SINCE ALL MS progresses ... it really is just a matter of HOW BAD the STENOSIS IS and TIME. Keep in mind the brain has redundancy in drainage routes (the spine that is less true) ... but it's the same process.

Stenosis ... back-flow ... lack of oxygen ... iron ... lesion. Whether it be the brain or the spine.


Does that not make sense to anyone else?

So maybe we should just clarify from now on instead of calling it PPMS/SPMS/RRMS/RPMS calling it by azygous CCSVI ... jugular CCSVI ... or multifactorial CCSVI?


Also KEEP IN MIND ... right now most "PPMSers" getting CCSVI treated are FAR along in the MS process. WHILE most RRMSers are newer to it.

So TIME is the factor everyone seems to be forgetting about. What IF a PPMSer got liberated the day they were diagnosed and stopped the disease process then ... would it not be the same results (potentially) as an RRMSer getting liberated on the day they were diagnosed?

I'm inclined to believe yes.

People getting the treatment the day their diagnosed solves nothing really. It tends to take a long time for MS symptoms to be spotted and even longer for a diagnosis to be given. The type of MS you have then kinda determines where you are in terms of progression.
Hope that makes sense.
But, you are right in that if the disease is picked up early on then CCSVI can at least me accounted for.

I agree, I was dx'ed 14 months ago, I only started "feeling" the symptoms 16 to 18 months ago...My right side, weakness in the arm & leg, before that I felt nothing. I was able to walk or run without a problem... Today, I use a cane and an prosthesis to walk around. Progression has developped rather quickly in my case... Hence the reason why I seek "any" treatment ASAP....

HEY

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"Never argue with stupid people... They bring you down to they're level and beat you with experience"

Here is my experience with a confusing diagnosis;
Looking back, my first symtom was probably L'hermittes 4 years ago.
Next was an Optic Neuritis in May 07. In Oct 07 I started with motor deficits and balance problems.
In Jan 08 I had bladder issues and steady , progressive motor changes.
I was diagnosed with RRMS in May 08. Had numerous other deficits-both motor , sensory, bowel etc start in summer of 08. I have been on Copaxone since July 4th 08.
My Optic neuritis seemed acute but every single other neurological change since then has been slow and gradual but changing fast. The only two things that ever improved were some sensory numbness and vision improvement following ON.I have probably 90% of all MS sympoms I have ever heard about except cognitive , speech and swallowing are all normal.
My neurologist tentatively changed my diagnosis to PPMS in Dec 09. She says I am changing much more rapidly than most with PPMS! I was sent to another Neuro for a 2nd opinion and had all tests redone and more. I saw him last week for a summary and he feels I have some relapsing components and progressive components to my disease course. He would not call it either RRMS or PPMS. I get worse every couple weeks and have for 3 years. I am now in a wheel chair and have a self assessed EDSS of 7.0 .
I am also feeling like I have no time to loose and will see my regular Neuro in 6 weeks. It will be then that I tell her I'm off to Poland to see Dr. Kosteki in Sept 2010. I can't wait to see her respond to that .
I will provide a very indepth report on the entire experience including great detail on how I improve or how I don't improve .
I believe that if there is such an animal as PPMS this is what I have. I have modest expectations and hope that my progression slows or stops for any period of time post liberation - if indicated.
I will keep this forum updated when I take my voyage to Poland.
...gary

I've posted my 12 week update here:

http://www.enjoyingtheride.com/2010/06/ ... entry.html

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Mitch
Please visit my blog at www.enjoyingtheride.com

Hi mitch, I'm Gary with a lot in common with you. I am 49 and just past two yrs into what appears to be a PPMS diagnosis. I am an Optometrist and still work part time. I can still type but it's fatigueing , lol. I will also post my results after my procedure in Sept. I also have realistic and modest expectations and would be satisfied with progression slowing or stopping. I hope that you have stopped progressing and look forward to further updates from you. I change for the worse every 2-3 weeks and have for 3 years. My heart is pulling for you - good luck, gary.

Bumping this up so it doesn't get lost. Would really love to hear from more liberated PPMSers, for better or worse.....

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Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy

Sorry, not Liberated yet. I just don't want people to forget, Zamboni said he was working on lumbar veins.

The connection with progression to me is this: spinal involvement. At about the same time, I lost my driver's license, job, ability to raise my left foot, and status as RRMS. I did not then or since, have any assurance of no relapses. I have had them since then, with full intravenous steroids. I think so-called secondary progression is code for adios. I have heard about not iflammatory. How the heck would somebody who sees you once a year know anything about your inflammation? If you fall out of your neuro's favour for some reason, run, don't walk, to another city.

I don't believe in separate MS 'phenotypes' except that I think once you are in a wheelchair, it reminds them too much of failure, so they see you less often. Besides, 'there is no treatment'. I say, it can be cerebro first, or sometimes it is spinal first. A remission is usually characterised by your ability to walk, and if you were never able to walk, you must be primary. Remissions come courtesy of replacement corollary veins. After a while, your vein-making machinery is not up to any more remissions.

Azygous and lumbar are spinal. When you lose circulation to your spine, your arms or legs can be affected directly. No brain involvement necessary, although part of walking is thought to be motivated directly by your spine, without brain involvement normally. Either way, the brain between your ears could be ok, and you could still be disabled. The progress of this disease appears to be from brain to spine, but maybe that's just me.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

I have never had brain lesions and was initially told I had tra\nsverse myelitis. Walking kept getting worse and more MRI's, tests for Devic's, sarcoidosis, etc. and a lumbar puncture with monoclonal bands. Over 40 when it got worse. So the PPMS diagnosis "fits. I am fully aware that getting treatment for me may not change anything or may only halt or slow progression at best. I think I have realistic expecttations, but want to know about others with same type of MS.

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Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy

We never find anyone with symptoms exactly like ours, do we? I was dx with "probable MS" in 1988, then went through 12 years of being declared "not typical" which led to investigation of physical spinal problems, vit b12, blood tests, etc. In 2000 I went to Mayo in Rochester, MN and was examined with all the latest tests and equipment and analyzed by [hopefully] the most knowledgeable neurologists. They said the reason it was not typical was that it was PPMS. I then began to see a neuro at Virginia Mason in Seattle who was a MS specialist and she explained that nearly all of my lesions were in my C-spine, thus my [mostly] lower body involvement.

From the new information I'm gathering on ccsvi, it sounds like I could have IJV (headaches at base of skull), as well as azygous and lumbar problems. I also take note of any mention of hemochromatosis (iron rich blood) because I have that one, too. I'm going for testing/treatment (?!?) asap with high but realistic hopes. With pp I'm used to being the bastard child.

Well I was Liberated 2 days ago and the answer is
YES
will tell you more later my wife is in bed and wants the light off ,She can't keep up with me now!

Ive been Liberated.

Colmmc.

Congrats, colmmc, can't wait to read more.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Congratulations, colmmc! I hope everything went really well. Like you, my darling man has PPMS. I'm anxiously waiting for the day when he has his appointment for testing and treating.

colmmc, i'm always curious of how old and how long someone has had ppms and how far progressed. do you mind telling? were there stents involved?

You say TomAHto and I say TomAYto...

RRMS is quite distinct from SPMS or PPMS in the sense that (theoretically) the latter two don't see remissions. I was diagnosed with SPMS and was told that I MUST have had an earlier episode even though I (and my wife and my siblings) can't think of anything that could fit the description. And in my case, my problems all started in the right side of my body, but after a couple of years it's transferred to the left side of my body, and my right side is fine... so was that a remission and a relapse at the same time? And I guess that since my decline hasn't been sharp, I "can't" be PPMS.

Someone said in an earlier posting that if CCSVI is the major initiating factor, then we are all somewhere on a disability line that is defined by severity of stenosis and time... and I would add a third dimension: the locations of CNS damage. RR or SP or PP are just convenient labels handed out by doctors who are giving you their best guess in the face of an extremely complex disease... and on top of all that, some are better guessers than others.

I've been liberated and they didn't find any problems in the azygous, so maybe I really do fit (mostly, sort of) in the SP category. But on here I've heard of a few "PPMS" people who have felt large improvements in a short time, while my own improvements have been slow and mostly only small bits at a time. For me, every improvement (or even stop in deterioration) is wonderful, but I think that the major important thing about being diagnosed with PPMS is that probably means it's aggressive, and so there isn't the luxury of time to wait and see how things pan out with respect to clinical trials, etc.

...Ted

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Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com