Life with MS & EDS

July 8, 2010

New Link between MS and EDS?

Filed under: Uncategorized — by mseds @ 10:37 am
Tags: , , , , , ,

This morning I came across a post at This is MS that discusses a presentation made by Dr. Guilio Gabbiani from the Centre Medical Universitaire in Geneve, Switzerland to a conference in Bologna, Italy.  I wish I had seen this before as it completely changes my perspective on my diseases.

Dr. Gabbiani took five specimens from internal jugular vein tissue removed by Dr. Zamboni from patients he treated endovascularly from areas not damaged by angioplasty and compared them against healthy control tissue.  His finding: MS patients had significantly more smooth muscle cells than the non-MS controls.  He found that there are less Collagen I type fibers and more Collagen III type fibers in MS patients.  It is thought that the connective tissue in MS patients switches from collagen I to collagen III.  Apparently it’s known to happen in the arteries, but finding this in the veins is a new discovery.  This could be a critical finding for CCSVI!

During the EDS diagnosis process, I learned that one of the major concerns that needs monitoring is cardiovascular health.  I’ve had an EEG for a baseline and so has my daughter.  I was told to get her EEG done every three years and annually during times of rapid growth (puberty.)  I thought of this in passing when I first heard of CCSVI and when I found out that my jugular veins are constricted.  Somehow the link didn’t set in until I read about Dr. Gabbiani’s findings.

It makes complete sense that my vein problem could be related to my other connective tissues issues.  How amazing would it be to find out that my MS is even more related to my connective tissues disorder than to an auto-immune disease?  I think there is a ton of research that needs to happen in this area, although I’m skeptical it will ever get funded.  I’m on a mission to find a doctor who knows about EDS and vascular surgery.  Since EDS already has a known vascular connection, I think this will be a much better avenue for me to pursue than talking with neurologists, who are obviously dead-set against discussing CCSVI with me.  I’ll let you know if I have any luck!

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6 Comments »

  1. I would love to talk with you more about this. I am also a mid 30′s Mom recently diagnosed with MS.

    I also just had a PT suggest I probably also have EDS. I made the link myself with the MS and after reading about the causitive properties with EDS, I immediately thought about the CCSVI and how this might apply to the two disorders.

    Anyway, I have not been able to talk with my Neurologist yet, but I have the feeling I will probably learn even more by speaking with someone else experiencing the same thing!

    Sincerely,
    Tara

    Comment by Tara — July 12, 2010 @ 10:41 pm

  2. Hi Tara! I’m so glad you wrote. Sorry to hear about the diagnosis! It’s great to meet others like me. It would be nice to chat sometime. Where are you located? I imagine email will have to do for now. Drop me a note at ivymseds@gmail.com.

    Comment by mseds — July 13, 2010 @ 6:33 am

  3. Good entry. Enjoy your writing, and your observations are logical and seem to be well-founded. Doctors think we sit arund all day whining, and contemplating our conditions. Well, we don’t, but we surely would love someone with brains enough to properly diagnose us. I started my new doctor, she checked and found the carotids were clear. Before she sends me to a vascular guy to check th eveins, she notices that my vitamin B was practically non-existent. So my D was fine, I take supplements, but my B was in the toilet. She is thinking celiac disease, which would explain my lifelong IBS. And the “on-the–verge-of-tears fatigue.” I am eating gluten free, taking B shots, and my life is turning around. Could the celiac cause the MS? And EDS? My hips and sholders are really bad. Gosh where does it end??
    Good luck with your hunt, I’m pulling for you. You are a logical and smart person and seeking the Truth cannot be a bad thing.

    Comment by karen — July 26, 2010 @ 3:17 pm

  4. Karen-

    Funny, I also have problems with shoulder/hip. Until recently it was mainly my knees but two months ago my hip sub-luxated and an MRI just showed abnormal labrum, and degenerative joint disease. The PA I saw seemed to think it was just DJD and wasn’t going to do anything about it. I have found that we have to be our own advocated because it seems that no one (most doctors included) understand our situation. I asked to be referred to a specialist. It is obvious to me this is due to an acute injury and should be treated as such…but the doc looks at me (38) and I appear normal and healthy and they just don’t beleive me, even when I have an MRI to back up my claims. *sigh* oh-well!! We deal with it the best we can. Don’t get down. You need to keep believing that you know your body better than anyone else.

    Comment by Tara — July 26, 2010 @ 4:44 pm

  5. Is there a link between Hyper-mobility and MS they have very similar symptoms I have both and cannot tell the difference at times

    Comment by Annediamond — October 20, 2010 @ 5:27 pm

  6. Funny you should ask. I just had an appointment today with a rheumatologist again to be tested for everything (again), because my neurologist thinks I have something in addition to the MS. I mentioned the EDS today and he seemed to think that it could be responsible for ALL the symptoms. I am fortunate to have access to very good specialists so I will be trying to get an appt. with a geneticist at the University of Washington. I’ll let you know what I find out!

    Comment by Tara — October 20, 2010 @ 9:06 pm


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