This Is MS Multiple Sclerosis Community: Knowledge & Support

cyberspace No apologies needed.
Sharon

I am not upset and there is no reason to apologize.

I never had mono (my wife did though when we were first married 23 years ago). Here I sit in the wheelchair at the young age of 45 (I know that is ancient to some here).

I just want this monkey off my back (or off my neck ). I would like to play ball with our six year-old son (we were late starting a family) or just be able to go outside and watch him play. I am sick of experiencing life through a window.

I am open to any logical ideas. To me CCSVI is so logical I can't help but think could all of the crap I have been through in the last ten years been resolved this easily. Where the heck have the gazillions of dollars gone for research?

It is time for researchers to think outside of the box.

I also wonder if I did have EBV, could the swollen lymph nodes contribute to the vein problem....? I have never, to my knowledge, been tested for EBV.

PEACE

Hey IHate...I hate MS, too. And I hate the fact that you are so sick (my husband is 45, too)...and I also hate the fact that all the research money is tied up in pharma and the autoimmune dogma, and that Dr. Dake needs some serious cash if he wants to keep this research going, and we're both stymied as to how to get it. I'm trying my hardest to find some donors and get more doctors on board. I'm sorry I snapped. It was one of those days...I have no right to snap, I'm healthy and able-bodied, and you have every right to ask these questions. Thanks for setting me straight...
I think if you had mono, it could have contributed to venous insufficiency, but it probably didn't cause your stenosis. I really hope we can get more docs onboard and more $, so you can get tested.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

just throwing these snippets into the mix...

Atherosclerosis is a chronic inflammatory disease characterized by migration of monocytes and T lymphocytes to the area of arterial wall injury [1,18,45]. Early investigators also noted that the lipid-rich atherosclerotic plaque may develop secondary to a primary inflammatory process [46]...

Severe rectal inflammation followed by stenosis induced by long-term abuse of analgesic suppositories containing paracetamol, caffeine, and codeine
"To our knowledge, this is the second described case of severe rectal inflammation and stenosis due to prolonged abuse of suppositories containing paracetamol, caffeine, and codeine"...

[Inflammation of the small pelvis causing rectal stenosis in IUD users]...

Inflammation and endothelial dysfunction in patients with carotid stenosis... (this one does not talk about inflammation being causal, just related)

Endoscopic treatment of stenosis in recurrent Crohn's ...However, painful abdominal cramps and even intestinal obstruction may occur when inflammation results in stenosis caused by edema and fibrosis...

The elusive link between stenosis severity and prognosis in stable ischaemic heart disease
"Recent studies suggest that in patients with acute coronary syndromes inflammation is not limited to the culprit stenosis but is widespread in the coronary circulation.9 In acute coronary syndromes, a pronounced and persistent elevation of serum indexes of inflammation is associated with a worse outcome even in patients receiving the best current treatment, including percutaneous coronary intervention."...

A 79-year-old woman seen at the hospital because of left abdominal pain was diagnosed as having retroperitoneal abscess caused by penetration of diverticulitis in the left colon after close exploration and was conservatively treated. Four months after a remission, the inflammation recurred and at the same time she had stenosis in the descending colon. Accordingly an ileostomy was conducted. Further 4 months later, the inflammation developed again, and the left colon was resected and abscess drainage was performed. Negative results were obtained in intraoperative and postoperative bacterial culture tests for both the abscess cavities and drainage fluid. At the third recurrence of inflammation, stenosis was found in the left ureter near the abscess lesion and a ureteral stent was placed. Furthermore, the inflammation recurred for a fourth time, and following this the abscess wall was immediately incised and scraped out, and an open drainage procedure was performed. Mycobacterial residues (Druse) were observed pathologically and the patient was diagnosed as having retroperitoneal actinomycosis. AMPC was given orally for 6 months, and no recurrence has been observed for the last one and a half years. It was concluded that the inflammation was caused by mycobacterial infection from the intestine to the retropertoneal cavity, due to penetration of diverticulitis. (author abst.)...

Hi JL are you suggesting the MS is a primary inflammatory disease and that it probably caused the stenosis after the fact?

Like MS is inflammatory so it possibly invaded and stenosed the vein?

_________________
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

If stenosis were created by inflammation, than steroids or other anti-inflammatories would open the affected areas, right? Not the case for Jeff- after a few rounds of steroids and minocycline and many natural anti-inflammatories like bromelain...we got his SED numbers down in his blood, but he still had jugs closed down to 90%. Dr. D said his jugs looked like they were "squeezed from the outside."
That's not to say this couldn't be the case for other MSers, though...thanks for the info, JL-
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

cheer i apologize if i somehow came across as implying that that collection of info is applicable specifically to jeff, or that inflammation is the source of all stenoses period.

to clarify for future readers, my previous post was intended as a collection of snippets providing part of the answer to ernst's question 'what causes stenosis'.

even if all ms-ers do have stenoses, it could be from a slightly different set of reasons for everyone, as has already been covered here by mrhodes40 - including jeff's scenario.

i've never said we can paint all ms-ers with one brush - in fact i've repeatedly said the opposite. i feel that this still applies if we do end up with a test that is positive in 99.9% of ms (or whatever) patients.

Very clear. I do think some folks who have not been reading this forum might wonder if it is purely inflammatory because we have been conditioned to think that way, but among other things not mentioned, Dr Zamboni did screen to see if treated people had less stenosis and they did not.

One would expect something like Tysabri would have altered the stenosis if it were a secondary phenomenon caused by inflammation.

_________________
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

no one knows

i don't think i buy the idea that removing inflammation would instantly return a fully developed stenosis to normal.. in other scenarios, stenosis development appears to be in some cases an end stage of a chronic process.

did zamboni find that people on anti-inflammatory drugs continued to develop new stenoses? at the same rate as pre-treatment?

I can't answer that, but what he has said is that the logical question to ask it whether inflammation causes these stenoses and that having been treated with these drugs makes no difference to the size or significance of these things.

More research will enlighten us on that I am sure

_________________
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

after looking at the way it's thought tysabri works, for example, i can see why its use would not change stenoses if they are the end stage of a chronic process. tysabri doesn't stop the inflammation process at the source, it's thought - it apparently reduces the transmission of inflammatory cells across membranes like intestinal wall, blood brain barrier.

cheer wrote:

What is Dr D's immediate need for $ personnel? clinical trial sponsor? What about getting sponsored by a stent mfr. I seem to remember soemthing posted saying Dake is associated w/ Johnson & Johnson a stent mfgr, Also Dr D told me that he gets to Gore mfg in Flagstaff AZ once a year and they make medical devices. maybe another source for sponsorship. If he needs big bucks one needs to go to an entity that would have mutual interest like stent makers. I believe Standfor has up to date imaging equipt.

Holly-
What a difference a month makes. Dr. D has Stanford behind him now, and more $ available. He and Dr. Cooke has been applying for some grants, too- things look much better then when I was ranting last month-
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS