Ccsvi applied to other "autoimmune diseases" ???

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Ccsvi applied to other "autoimmune diseases" ???

Postby problemsolver » Sat Aug 06, 2011 1:03 pm

I was diagnosed with ms 10 years ago after a brain MRI following my second optic neuritis. I have had symptoms that could be suggestive of vascular connective tissue disorder adding up in the last 10 years. My blood tests for ANA have always been negative (it was tested twice). I never found a reason for these other symptoms (that are not related to ms).


Now, I decided that it was time to read everything I could about CCSVI and possibly be treated (I was tested last summer in Barrie and I met 2 of the 5 criteria for CCSVI). Before deciding on being treated however, I told my GP about my constant shortness of breath that had been ongoing for years. I wanted to have that looked at before considering treatment for CCSVI. I had a spirometry and my results were abnormal and showed “mild restriction”. Pulmonary restriction is rare (obstruction is more common). I have trouble finding any causes of pulmonary restriction that are not horrible. I think the most likely explanation for me would be vascular connective tissue disease.


While I am waiting for my next doctor’s appointment, I would love to know if anyone has read any research or is in touch with researchers that have an interest in the link between CCSVI and vascular connective tissue disease. It seems like the emphasis is being placed in ms and then on other neurological disorders.
Last edited by problemsolver on Sun Aug 14, 2011 8:14 pm, edited 1 time in total.
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Postby Cece » Sat Aug 06, 2011 1:16 pm

There has been a lot of discussion here of Ehlers Danos, which is a connective tissue disorder.

My understanding is that CCSVI has abnormalities in the connective tissues. We've seen slides from Dr. Zamboni showing healthy vein and CCSVI vein. Quite different in composition. I don't understand it all the way yet.

Dr. Diana, who I think is based on Texas, is an opthalmologist with two research studies underway involving CCSVI and the eyes. She has Ehler Danos and has been a great source of information on the subject. She has not posted here for a few weeks though. Her website is the Eye Doc Blog.
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Postby problemsolver » Sat Aug 06, 2011 1:37 pm

Thanks a lot for your reply Cece!

I have seen some of Dr Dianna’s post. Based on my symptoms though, I would suspect a disease in the lupus family and not a connective tissue disease that is strictly due to genetic inheritance (but at this point, it doesn’t hurt to get tested for genetic diseases if my blood tests still do not show anything abnormal)
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Postby Cece » Sat Aug 06, 2011 1:41 pm

Can lupus or the connective tissue disorder explain the two attacks of optic neuritis? My first thought is that it's possible to have both MS and the other illness.

Whatever the case, I wish you answers and, if possible, solutions.
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Postby problemsolver » Sun Aug 14, 2011 8:06 pm

Cece wrote:Can lupus or the connective tissue disorder explain the two attacks of optic neuritis? My first thought is that it's possible to have both MS and the other illness.

Whatever the case, I wish you answers and, if possible, solutions.



Thanks Cece!


It is possible to have ms and another autoimmune disease (like lupus)


Lupus can cause optic neuritis although I am probably less likely to have lupus because my ANA were negative (it would be more likely to be something else). Optic neuritis can have other causes. Even Sjorgren’s syndrome can cause optic neuritis (I have all the symptoms of Sjogren’s syndrome) I have about one relapse every 1.5 years. One hand and both legs have been affected by my ms and I have had numerous optic neuritis. I still do not have any visible symptom but my EDSS is starting to be pretty high and one leg is getting pretty weak. My brain is full of lesions and my spinal cord has a few. My biggest problem is fatigue!


I asked my neuro last week what would happen to my ms diagnosis if I was diagnosed with another "autoimmune" disease that can affect the CNS. He always said that there was no question I had ms in the past. However, he said that my ms diagnosis would be revaluated if I had a firm diagnosis of something else that can affect the CNS.


Back to my original question, I am wondering how other autoimmune diseases could be affected by the discovery of CCSVI in ms patients. Could venous abnormalities be an underlying risk factor in the development of “autoimmune diseases”?
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Postby civickiller » Tue Aug 16, 2011 2:33 am

i would say go see a chiropractor that deals with the upper cervical spine specifically C1 or atlas so you can see if you can benefit from Upper Cervical Care
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Postby Cece » Tue Aug 16, 2011 7:59 am

Back to my original question, I am wondering how other autoimmune diseases could be affected by the discovery of CCSVI in ms patients. Could venous abnormalities be an underlying risk factor in the development of “autoimmune diseases”?

In the recent 'massive gene study' it was found that a third of the genes common to MS patients are also common to other autoimmune diseases. These genes were said to affect the immune system, but Cheer has shown some research showing that genes can affect both the vascular and immune systems.

I would want to look at lupus and say, what venous abnormalities, where, could have this result? And the same with diabetes mellitus, which looks very similiar to MS genetically. What venous abnormalities, where, how.

Anything in the human body that can go wrong, does go wrong. Sometimes very very rarely, sometimes more commonly. So what can go wrong with the endothelium or the vasculature?

Autoimmune may have become a lumping-together category of illnesses that are not well understood. Absolutely the immune system can go haywire too. But it can also be effectively cleaning up after a different aspect of the body has gone haywire.

As for the original question, it is just too early to know. CCSVI is only just been defined and preliminarily explored. We've yet to know if the implications are broad to include other illnesses or narrow to include MS or more narrow still to include only a subset of MS.
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Postby PointsNorth » Wed Aug 17, 2011 12:18 am

I have Crohn's Disease in addition to MS. I thought it was interesting that Tysabri is used in the treatment of Crohn's altho I've not taken the drug for either disease. Interestingly, LDN worked like a silver bullet for Crohn's (when it's intended target was MS). Complete remission for 8 months! I use occassionally for 1-2 months at a time.
Albany 2010. Brooklyn 2011
Calcitriol+D3 2013-
Hurry up and wait.
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