A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Post by SophieandElle » Sun Aug 03, 2014 9:42 am

Here we go:

I am 29, a (former) runner, exercise fanatic, new Mom (she's 11 months), and a teacher. About 8 months ago I had frozen shoulder. After a steroid pack from my GP and some rest, it went away, but then weeks later I had excruciating chest/arm pit/hand pain. This went on for months until I was diagnosed with arterial thoracic outlet syndrome. But, between the original symptoms and the diagnosis, my eyes had become "veiny" and just slightly droopy, my feet started tingling, trouble swallowing and jaw and face pain, a huge increase in my BP were all happening. There were tons of other crazy things: horrible periods, weird bladder stuff, etc. (I had an MRI and neg. for MS)

Because it is summer and I'm not working, I could relax and some of the symptoms abated, but would start again after an active day (just cleaning, taking care of the baby, etc.). I have been in the recliner 80-90% of the day! Anyway, all of this led me to CCSVI info and the relationship between our vascular system and how the rest of the body operates. I also see a connection between PPMS and extremely active individuals.

This is my theory:

The more we run, lift, etc. the harder it is on the cervical spine and thoracic outlet. For example, when we run we breathe through our chest, not diaphragm, so this puts pressure on those scalene + sternocleidomastoid muscles which lend themselves to TOS. And, this puts more pressure on those vertebrals, carotids and jugulars. Further, thoracic outlet syndrome changes our posture to either a head tilt or head forward posture. These postures put even more pressure on the cervical spine. (I had a NUCCA procedure and it stopped my back tingling!)

The reason CCSVI may not work as well for PPMS'ers is because there is compression somewhere that needs to be alleviated, just like in CTOS/CTNVS.

It is striking how many PwMS and PwPD begin with symptoms so closely related to Thoracic Outlet Syndrome: frozen shoulders, finger spasms (how Michael J. Fox's started), numb and tingling arms. So, maybe those with PPMS should search for occlusion to these essential veins and get treated this way, like Noda's theory.

It seems like Dr. Collins @ UCLA is the best for this as far as imaging. Check out some of his case studies.

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Post by MrSuccess » Thu Aug 07, 2014 10:51 am

Hi SophieandElle

your thoughts and ideas on MS are welcome. You are new to the TIMS CCSVI message boards ? New thoughts and angles of reasoning are most welcome.

Most people that post in this section of TIMS are very interested in the study and ideas
of CCSVI. I think we are in/about year SIX , of all things CCSVI related.

And what a fascinating six years it has been.

CCSVI has now matured . And this is the reason there are fewer posts. If you have the
time ..... there is a great amount of material to read. Much to learn.

You will read both POSITIVE and Negative posts.

I am firmly encamped in the positive position , that CCSVI is the lead cause of MS. You
might find my TRAUMA >>>> MS posts to be of interest.

I have more information to support this theory , that I will post on another day.


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