This Is MS Multiple Sclerosis Community: Knowledge & Support

The manifestations of MS depend upon which neural tissue is demyelinated. Some have weakness, some have sensory to one area, others to another ara.

I suspect that the cold hands and feet may be a manifestation of sensory damage OR due to damage of the autonomic nervous system that controls constriction of the blood vessels, sweating, etc.

The other day, one of my patients told me that immediately after her treatment her hands were sweating, something that she had not done in many years. The speed of the effect suggests placebo or a vascular autonomic effect. Sometimes vasoconstricting to reduce blood flow and feeling quite cool, othertimes vasodilating and increasing blood flow and feeling quite warm

In almost every report, which admittedly is anecdotal, we hear that feet and hands are warmer very quickly after the procedure was done. That would be too quick for any neurological damage to repair itself, so it would make sense for it to be either as you said a placebo effect or else vascular blood flow related. I know it's been said here on the forum that blood flow is what cools the brain...that blood leaving the brain is warmer than the blood flowing in, since it carries heat away, and that in CCSVI one of the reasons for the cognitive issues is 'hot brain' due to the blood flow not working properly to cool the brain. I don't know if this would be a significant enough effect to cause the cold hands and feet downstream or to warm them once it's fixed. The other explanation for Raynaud's phenomenon (super cold feet, secondary to M.S.) that I've read is that it's a spasming of the capillaries or small blood vessels...which as far as I can understand it sounds like what you're saying about vasoconstricting/vasodilating/autonomic nervous system.

No real question here, just wanted to throw that out there.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

I can attest that it is truly accurate, at least during my liberation, that both hands and feet can warm up! I was very cold because the room was freezing. Sclafani had the heat off to keep costs down for the procedure. He is into saving that way. My legs were tremoring and my feet were freezing. Ballooning of the azygos led to an immediate cessation in the tremors and some hot feet. Believe me it wasnt placebo and it wasnt anectodal. In fact i didnt even realize it nor did he. I remember saying "hey look at my legs" they stopped shaking. I think thats when someone muttered
holy camoly i am scared shitless!

Good Day
I'm new here & I can say very over whelmed by all the information on this forum. If this question has been asked before please forgive me.
I was diagnosed with MS in 05 at that time I tried the Swank diet which is suppost to slow MS. My question is related to my blood pressure, it's low and for as long as I can rememder it's always been low. Would this be a good thing or bad thing in regards to CCSVI? Also when I was on the diet I lost 25lbs which is good, but I was light headed all the time, now that I'm not on the diet I'm no longer light headed. Would you have any idea why?
Thanks again Dr Sclafani for all your time & effort to help us, I wish there were more doctors like you around willing to help.

isn't there anything that is private around here?

actually it was i who said that. it was so strange, immediate and humbling

george, hope things are holding strong!

s

The range of normal blood pressure is quite broad, so it is difficult to answer that question. Of course, if you faint all the time because your blood pressure is low, that is not a good thing. There are m any causes of low blood pressure, some good, some diseases.

with regard to whether low blood pressure would be good or bad, I think it is not really relevant.

but, allow me to repeat, it is not a great idea for me to answer specific questions about specific personal medical issues without really knowing so many parameters of your history, physical exam, past medical history and more. I could give someone misleading information and put myself in medicolegal risk.

Dr. Sclafani, I would just like to re-iterate my appreciation (and dare I write for all?), I'm sure, all of our appreciation for your candor, and willingness to engage we tiresome laypersons. I can not recommend for South of the 49th, but we North of the 49th, are not a litigious people (well, we do like to sue our Gov't!), so, I would hope that any "medicolegal risk" would not be yours. Your discretion is noted, and appreciated.

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My name is not really Johnson. MSed up since 1993

Hi Dr. Sclafani!
Yes I was the patient who got the sweating fingers and palms towards end of liberation a couple days ago. Did not seem to continue but i am going to start pt this week. It will be iteresting to see how we all fare in the months to follow. Tired of being underwater from the rain in Southern NJ. Again thanks again for being the open minded educational "cautious cowboy"! B

Dr. Scaflani, may I repeat my question which was probably lost between IBT Posts. Thank you.

Dr. Sclafani, your comment on Johnson's MRV has raised a question. My venography shows a very similar pattern: a robust network of collaterals starting just above the upper stenosis and hooking back up just under the lower stenosis. I received stents, upper first, then lower on one side. The venography clearly shows that when the upper stents go in, the collaterals disappear almost entirely.

If the lower stenosis is primary, and the upper is just a consequence of reduced flow, it seems to me relieving the upper stenosis would not have any effect on the collaterals. Am I wrong?

Thank you!

Hi everyone, I've been a member for a few months but this is my first post.
I have a question for Dr. S if he wouldn't mind.

I was wondering if some stenosis, especially if it's severe, could be dealt with surgically to permanently fix or by pass the problem area. For example by grafting or replacing the part of the vein with CCSVI stenosis?

Brace yourself for more accolades:

i was speaking to my caregiver about my hopes for ccsvi intervention realistically with the form of progression that i have, not unlike mitch and marc. i told him about you and i said,"he is a truly an angel of mercy." i was surprised by what i said, too.

This illness brings with it so much collective suffering for us and the people who love us. with the suffering, paradoxically comes many gifts. i believe that there is a positive correlation to the depth of angst and the depth of gratitude. We are a population in terrific need of alleviating some of the suffering. there has to be tremendous satisfaction for in your benevolence. Thank you, thank you, thank you. Aliyah

This is a good thought. However bypass of veins is fraught with risks of secondary thrombosis because of the slow flow and low pressure. Many surgeons are nihilistic about this idea. I havent found a surgeon willing to do this right now. The Ferrara group has done it a few times. Nothing published yet.

I have a question. my husband had angioplasty done and had no blood thinning medication given to him. Why have you chosen to have your patients use them?

Thank you so much for joining us here on TIMS, "Dr Sal".

Looking forward to meeting you.


DL