This Is MS Multiple Sclerosis Community: Knowledge & Support

Dr. Sclafani,

I'm 25 with suspected, undiagnosed primary progressive MS for 3 years but there were signs and symptoms before then. My disease is aggressive, already causing atrophy of my forearms (being a computer programmer, I will have to go on long-term disability soon because of the difficulty typing), and bilateral weaksness and spasticity of all four limbs. I won't be walking for much longer and the use of my arms is rapidly fading. How much success have you had treating PPMS patients?

I believe Dr. Schelling is correct in postulating that venous reflux into the lumbo-sacral region that displaces CSF cranially from the lumbar cistern is one of the forces that causes fibrosis of the flanks of the spinal cord (he has reviewed my MRIs and while there are no lesions, typical of PPMS, he noted faint indications of involvement of the flanks of the cord). Virtually all of my symptoms are motor related, typical of PPMS. The reason I believe he is correct is that I have observed a very recurring pattern of flashing lights and exacerbation of my symptoms whenever my GI tract issues (which have exited since age 13 after head trauama, my disease is multi-factoral for sure, explaining why it surfaced so early) flare up, frequently after eating a meal and usually in the mornings. Morning diarrhea has been a part of life since about age 16 and my symptoms worsen after defecation. In fact, I am almost certain that the physical action of leaning forward (after being seated for a relatively extended period of time) can cause the flashing lights and worsening of my symptoms. In addition, my abdomen pulses very strongly, which can fluctuate but the pulsing is most severe during times when I know I'm progressing.

PPMS is a slightly different animal and I have been studying MS for three years and I am sure that there are more forces involved in producing these CSF shifts. I am actively pursuing those but I am interested in being treated for CCSVI again. I was treated by Dr. Sullivan in October 2010, very early on and one of his first patients. There was narrowing at both IJV valves and superior to the valves, and a stenosis in the arch of the azygos and another 4cm stenosis 10cm below the arch. There was extensive reflux into the branch vessels of the azygos, per the report. A lot has changed since then. My ascending lumbar vein, renal veins, and sacral veins have not been inspected which is what I'm most concerned about.

Thanks for all the time you spend on these boards, doctor.

-Peter

An overlap. I haven't heard it described that way before. Makes perfect sense.

(Overlap meaning we might have fatigue caused by MS and/or we might have fatigue caused by CCSVI syndrome. We might have limb weakness caused by MS and/or limb weakness caused by CCSVI syndrome. And you only sort out which is which when you see which symptoms disappear after successful CCSVI treatment, and which remain.)

I like the overlap description. I think it fits well. But I think there are probably multiple overlaps, hence some get great symptom relief with diet, others with atlas balance, others with ccsvi and others possibly some other treatment.

I posit that you might have symptoms of weakness from both ccsvi and ms, and get some varied response.

obviously conjecture. I am just trying to figure out a rationale why some patients have amazing improvements and others do not.

if we could ever get buy in by colleagues, there is much to think about.

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

An interesting discussion but please focus on giving safe effective therapy for CCSVI syndrome and getting other IRs to follow this. After 50 years of massive spending on MS research, Neuros cannot be certain of the causative factors of MS, so I do not give IRs much chance in the next few years, even if the Neuros play ball.
Kind regards,
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

Buy-in by the neurologists will eventually happen, unless the results from RCTs are shockingly different than expected.

any image to share?


Definitely easier to see in the second image.

If residual valve material is a frequent cause of restenosis, could the thickness of the valve as seen on IVUS be predictive of how much residual valve material will remain and whether restenosis will occur?

These are very important factors in providing safe and effective therapy. Frankly. We need to try to determine which patients will benefit and which will be harmed by this therapy. And I think it will be delayed by the lack of collaboration.

This discussion has nothing to do with the cause of ms but with assessing the manifestations of both ms and ccsvi. One of the keys will be the symptoms

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

Totally agree Dr S.
One of the key points was made above by Cece I think. The reason that PwMS with the episodic form of MS are a case in point. The reason for a rapid loss of motor or sensory function has never been researched. It is one of the same factors in CCSVI (PTA with IVUS) Treatment that are of HUGE learning.
I asked on the main board a long time ago about the timing of the episodes and got little response that would have given any understanding at all.
The way that the episodes come on and then pass with sometimes residual losses is so similar to the PTA outcome that it is screaming for a group or several groups of interested researchers to make a name for them selves.
And again the changes in PPMS people is another reason for the PTA outcomes to be of incredible interest if there was people interested in ill Health causes.

It's sad there are only the few of us on this board that are passionate about life.

Regards all,
Nigel

I believe I read E.B.White had a device for manual head self-traction which consisted of a helmet-like affair with a rope attached to it, which you could throw over a barn rafter. Sounds like a reason to be careful; you'd in all probability have enough rope to hang yourself.

Maybe not such a bad idea. I did a fairly hard neck compression shortly before I was diagnosed, when I was trying to get some Christmas lights off a tree and fell off the top of a six (eight?) foot ladder onto my backside.

Maybe vertebrals is why PTA sometimes doesn't work, or even only partly, since we can't balloon vertebrals?. If we could combine treatment by PTA with something for that -- traction?

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Actually, i think it may be difficult to see CCSVI in children by all methodologies as i believe that the thickness of the valve leaflets may be too thin. However, i havent studied any children with ultrasound or IVUS.

If nothing is seen, will the conclusion be that ccsvi doesnt exist or that it is not visible?



#1 I do not know of any anticoagulant effects of natalizumab. I am not an MS specialist, but i am a vascular specialist and I would not say that anticoagulants increase speed of blood flow in general.

#2. I have noted decreased flow in patients with ccsvi compared to healthy control, the control being retrospective, namely evaluation of young men sustaining gunshot wounds of the neck, receiving arteriograms that show the venous phase . But more to the point, i have found that the more diminished the flow is, the easier it is to see these stenoses

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

There are many people on this board that are passionate about life. Many just choose to read rather than write

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

Remember this case? I think the threshold to choose to balloon a vert is higher, because there's no research on it and the verts are not the major routes like the internal jugulars, but it is worth researching and stetching the boundary in this direction, carefully, and for patients such as this one with an occluded jugular and an as-seen-on-IVUS bad valve in the vert.
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-6540.html#p188661
That white dot (yellow arrows) is still awfully mysterious. It's hard to know if or how much a web affects flow. It is present throughout the vein.

Hi Doc, I'm sure this question has been asked before so I will apologize now for asking the same question again.
When you did the work on me last August my issues were the valves and the leaflets. Is there a procedure that would eliminate/remove the leaflets if they continue to cause restricted flow?
Thanks

You took the words right out of my mouth.

Certainly 794447 views to date says it all