CCSVI skeptics

marcstck · Post by **marcstck** » Mon Jun 08, 2009 6:33 pm

mrhodes40 wrote: Marc the thyroid gland is drained by these same veins, depending of course on the individual person's area of blockage. For example mine is too high to impact it......

and there is an inverse relationship between RA and MS. Wouldn't you know it I have both................how'd that happen?
This study demonstrates coexistence of RA, AIT, and IDDM at higher than expected rates but reduced comorbidity between RA and MS
here

I don't think that venous insufficiency would account for anti-thyroid antibodies showing up in my blood, which is the diagnostic marker Hashimoto's.

The fact that you have both RA and MS is unusual (and terribly unfortunate), but it's a bit of a leap to ascribe both to CCSVI. RA and MS may coexist in inverse proportion, but there are a whole host of other autoimmune conditions that exhibit high levels of comorbidity with MS...

I don't mean to "firehose" your obvious conviction to this theory and its resultant treatment, but objectivity is the foundation upon which the CCSVI hypothesis may take root...

chrishasms · Post by **chrishasms** » Mon Jun 08, 2009 6:54 pm

dignan · Post by **dignan** » Mon Jun 08, 2009 6:57 pm

Marc, you bring up a lot of good points. I'm pretty firmly planted on the fence about where CCSVI fits into the MS picture.

I've been wondering exactly how the venous blockages are caused. If we are born with them, I assume there must be some kind of genetic factor that causes bad flow in the veins coming out of the head. I guess it could also be the result of something that happens in the womb (e.g. there was some speculation that the MS birth month thing could be related to the vitamin D status of the mother while pregnant).

So my thinking is, if CCSVI has a genetic basis, could that genetic basis not tie in to autoimmunity somehow? I don't have an answer, obviously, and I don't think we know enough about the human genome to figure it out without a lot of study. Anyhow, I don't think CCSVI necessarily precludes autoimmunity...but it could...further study required...

chrishasms · Post by **chrishasms** » Mon Jun 08, 2009 6:59 pm

marcstck · Post by **marcstck** » Mon Jun 08, 2009 7:07 pm

chrishasms wrote:Well if you read down the list there is a whole post called "I'm waiting." I am the author. I did my leg work for MS and I'm happy with where I am right now, even with the disability I have. But, even my doctors at Johns Hopkins are fascinated with this right now too. With the number of people having this done now and the fact I just had an MRI on Thursday showing healing and no activity there is no reason for me not to wait to see other peoples MRI reports. I know what I did allows for healing for ME. Good enough for now but I pray this works for everyone because I am sitting on my hands with nervous excitement.

If you are that close to becoming bed bound...listen to me please. I was there. I was within three months of being bed bound with a catheter when I was accepted to do Revimmune. I was so weak in the hospital I could barely stand to get to the bathroom, and I used a wheelchair, a full 8 - 12 steps away. You need a quick, stop this horror now, fix. You need to look into HiCy or Campath. I have actually seen some folks stop this horror with Tysabri, and I just read today, get something back. The Revimmune I think if you are RRMS or SPMS, with the other AI issues, they would love to see you because my other AI issues went away because of the HiCy as well. I would think they would like to see if restarting you would end those other issues.

Point being you have got to do something to stop this.

Thanks for the advice, but unfortunately I've already been turned down for revimmune. I've never had any enhancing lesions, or evidence of inflammation, so they rejected me. I was one of the first to apply.

Campath, too, is being reserved only for people with relapsing forms of the disease. I've already tried Tysabri, Rituxan, plasmapheresis, intrathecal methotrexate, along with a whole bunch of other treatments, none of which has been of any benefit whatsoever. The one treatment that did temporarily knock back my symptoms was a 10 day course of IV Solu-Medrol, which unfortunately left me with the horrendous side effect of avascular necrosis, which has destroyed my hips and shoulders. Both of my femoral heads have collapsed, but I'm not a candidate for total hip replacements because of the ravages of my neurologic disorder.

I'm scheduled to be seen at the National Institutes of Health next week. They've agreed to look at my case because it's so atypical. I'll be getting a complete going over by the government researchers that practice there. Hoping to get some answers, and possibly some new ideas for treatment.

I've also begun the process of being evaluated to undergo stem cell therapy in Israel. That's my fallback plan if all else fails...

By the way, I've been seen by Dr. Calabresi at Johns Hopkins, who is the head of their MS clinic. Although I found him to be a terrific doctor, I passed him on some of the CCSVI materials, and he was quite dismissive. So I guess not everybody at JH is intrigued, unless he's become intrigued in the month or so since I sent him the materials...

cheerleader · Post by **cheerleader** » Mon Jun 08, 2009 7:40 pm

Marc,
I hope you "find what you're looking for" at NIH. You wished that to Jeff and me before we went to Stanford... I truly hope you get your answers, too. Hang in there and please keep us posted. The more information we share, we more we learn.
cheer

mrhodes40 · Post by **mrhodes40** » Mon Jun 08, 2009 7:59 pm

I never ascribed RA to CCSVI, I'm sorry it looked that way. I'm glad you agree it is a bit unusual, that was my point.

you have no way of knowing if Hashitmoto's antibodies are related or could be to CCSVI one way or another, I just pointed out the obvious fact that the thyroid is drained by the same veins. It is also true that scleroderma, an autoimmune disease, can be triggered by venous insufficiency. HERE

My point is that it is not true that MS ers are at risk for all autoimmune diseases, as you seem to paint them with a general brush, though they seem to be especially prone to thyroid issues (not referenced). I'm just pointing out there may be a reason for that...

The results show an excess of autoimmune disease within these families, but no significant association was seen with non-autoimmune diseases. The higher risk in multiplex than simplex families. While the increase in risk applies to each autoimmune disease, autoimmune thyroid disease (and Graves' disease in particular) contributes disproportionately to the excess risk. There was no increase in autoimmune disease within patients with multiple sclerosis themselves when compared with the index controls or population data. We conclude that autoimmune disease is more common in first-degree relatives of patients with multiple sclerosis and hypothesize that common genetic susceptibility factors for autoimmunity co-exist with additional disease specific genetic or environmental factors, which determine clinical phenotype in the individual

HERE

I am not saying thyroid issues are caused by CCSVI, I have no way of knowing that. but it is possible, someone needs to look, that's all.
Hopefully people will check into this issue and then we will know more. This paradigm may open up a lot of avenues of investigation in many fields.

mrhodes40 · Post by **mrhodes40** » Mon Jun 08, 2009 8:03 pm

man a ton of posts while I was sleeping on my post--Good luck marc at the NIH! I wish you well!
marie

chrishasms · Post by **chrishasms** » Mon Jun 08, 2009 8:09 pm

marcstck · Post by **marcstck** » Mon Jun 08, 2009 9:49 pm

Thanks for the well wishes, folks. I'm not one to wallow, but I do feel like it's time for me to catch a break. I've been battling this thing for over six years now, through a nonstop decline, and I'm getting tired of watching myself whither away. The next few months will be telling...

Chris, thanks for your thoughtful post. You're absolutely right, as patients we must advocate for ourselves. No matter how great the Dr. in whom you entrust your care, at the end of the day you're one of hundreds, if not thousands, of patients that they see. It's contingent upon each of us to make sure we get the best care we possibly can.

And to all who have already undergone the stenting procedure, or are preparing to do so, I wish you the miracles you seek. I will ecstatically rumble down the trail you've blazed if the destination is "Curesville"...

Sharon · Post by **Sharon** » Tue Jun 09, 2009 5:08 am

Mark -

I would also like to add my hope for you that you are able to find something that will help your further decline. I have never showed inflammation or activity on my MRI's - but I know that my weakness was getting worse. When Chris started posting about Revimmune, I became interested but soon found out that I would not be a candidate. When Cheer and Marie started on their journey with CCSVI, I was elated with hope that there was something for me. Keep up the good fight! - take care.

Sharon

MaggieMae · Post by **MaggieMae** » Wed Jun 10, 2009 6:01 am

Mark,

Have you been tested for Lyme's Disease?

LR1234 · Post by **LR1234** » Thu Jun 11, 2009 2:15 am

I Have high thyroid antibodies...well had high thyroid antibodies....for the first time since I got ill 14 years ago these have returned back into the "normal" range.

I have been doing the abx therapy/LDN Best best Diet and supplements.

marcstck · Post by **marcstck** » Thu Jun 11, 2009 10:44 am

MaggieMae wrote:Mark,

Have you been tested for Lyme's Disease?

Yes, I have been tested for Lyme disease, by a Lyme literate doctor. I was tested using a variety of methodologies, and was told that I was negative for Lyme...

Thanks for the thought, though. I do believe that many people walking around with a diagnosis of MS actually are suffering from chronic Lyme disease...

MaggieMae · Post by **MaggieMae** » Thu Jun 11, 2009 11:41 am

Yes, A few years back a co-workers' sister went through many doctors and many diagnosis (MS, Lou Gehrig's, spide bite) before finding that she had Lyme's disease. Most doctors ruled it out, but one found it. She went from walking to wheelchair so quickly. Last I heard she was doing better and walking again.