purple feet and ccsvi

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

purple feet and ccsvi

Postby lucky125 » Mon Dec 21, 2009 9:09 pm

I just saw my neuro for the first time in about 4 months. I was nervous to bring up ccsvi to him based on the negative reactions so many people seem to be getting.

Was I in for a shock! HE brought it up! He has been following Dr. Zamboni's research for the past 2 years and is very excited about it. He just met with the chief of vascular surgery at his hospital to try to get him on board to test and treat.

He definitely thinks that my purple feet, and those of so many of his other patients, has to have some relation to ccsvi. He is excited to have a plausable explanation for this common phenomenon in MS patients. He explained to me that, for all intents and purposes, the brain is an extremity, too. If too much blood is getting stuck up there, it can't get to the other extremities that need it. At least that is my non-MD understanding of what he was trying to say.

That is what has fascinated me about reading stories like Marie's. If I recall correctly one of her first improvements was less sensitivity to cold. I'm ALWAYS cold, not just my fingers and purple feet. Oh, to not be cold all the time!

I have been trying to absorb everything in this forum since I found it about a month ago. If there is already a thread about this, would someone please lead me to it?

Thanks!
Lucky125 (and feeling luckier everyday!)
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Postby AndrewKFletcher » Tue Dec 22, 2009 3:14 am

Hi Lucky

Your poor circulation problem can be improved using Inclined Therapy. It is certainly worth trying as warmer hands and feet were the first reports from my wife and I some 16 years ago. Since then many more people have validated this.

One condition this therapy does not work well with is a collapsed vein in the foot or lower leg. Inclining the bed in this case will cause a colour change within an hour or so so can be easily identified.

If this is not a problem then I suggest you research Inclined Therapy on this forum and on google.

Andrew
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cold purple feet

Postby jak7ham9 » Tue Dec 22, 2009 5:30 am

my feet are often purpleand cold too . My hands too. this is improvrd dramatically by any consumption of alcohol temporarily (not much of adrinker alcohol works as vasodialtor) Also high dose niacin works vasodialtor for aprox an hour not only do I get warm hands and feet also most of my tightness disapears and I can walk around and even jump a bit of course this disappears fairly rapidly. Niacin only works as vasodialtor for small period of time where levels are raising. HBOT works similarly for a short period of time following I am looser more energetic etc. This all points clearlt to circulation and oxygen. I am still not sure why people have problems believing this. I do think though that constant chelation with edta and desferroxamine should probably be followed by all suffers even as preventitive measure after operation. to stop reoccurrence I have personally seen people with 80% clogged arteries cleared within a year through chelation and tested by ct scans. I am going to start using this myself until I can get operation. Insurance will cover chelation for heavy metal poisoning removal which in this case it really is. Warning I had weird reaction last week with addition of 30G viatim c to edta my neck shoulders got really tight and I got something I can only describe as lock jaw (similar ex tetnus) This only lasted for a couple hours after chelation but made me think of iron reaction
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Postby jay123 » Tue Dec 22, 2009 5:57 am

Interesting, purple feet here too.
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Re: cold purple feet

Postby reg613 » Tue Dec 22, 2009 6:08 am

jak7ham9 wrote:my feet are often purpleand cold too . My hands too. this is improvrd dramatically by any consumption of alcohol temporarily (not much of adrinker alcohol works as vasodialtor) Also high dose niacin works vasodialtor for aprox an hour not only do I get warm hands and feet also most of my tightness disapears and I can walk around and even jump a bit of course this disappears fairly rapidly. Niacin only works as vasodialtor for small period of time where levels are raising. HBOT works similarly for a short period of time following I am looser more energetic etc. This all points clearlt to circulation and oxygen. I am still not sure why people have problems believing this. I do think though that constant chelation with edta and desferroxamine should probably be followed by all suffers even as preventitive measure after operation. to stop reoccurrence I have personally seen people with 80% clogged arteries cleared within a year through chelation and tested by ct scans. I am going to start using this myself until I can get operation. Insurance will cover chelation for heavy metal poisoning removal which in this case it really is. Warning I had weird reaction last week with addition of 30G viatim c to edta my neck shoulders got really tight and I got something I can only describe as lock jaw (similar ex tetnus) This only lasted for a couple hours after chelation but made me think of iron reaction


Jak:

Super post! I don't know what to say except that you are amazing. I say this because you are thinking outside the box and, god knows, those who do that are few and far between.

What you are doing is exactly the best thing for MS if you can't get jugulars seen to. For starters, think of the "soup" side effects you are avoiding. By "soup" I mean the crap foisted by the hucksters to keep those donations pouring in and hope everlasting.

I have seen your idea work and in that case, saw the person come up with it on his own, empirically, like you did.

Of course, there are dangers if it's not done right. These are the fine tunings.

Alcohol must be kept to the minimum optimum (alcohol causes iron build up too) but if this is known, it can be monitored.

Chelation can be overdone too. Remember the definition of toxicity is "too much."

Please report back as to ideal amounts and suggestions. There are as many types of MS sufferers as there are people types. Some will utterly embrace the medical community and others (although much fewer in number) will go it alone picking and choosing what they want from the medical warehouse.

I was very encouraged when I read your post simply because of the kind of person you are. It's my relief you see here.

I am all too aware of the fact that MS exists because it is allowed to go on. It's like a war in which one side actually turns to the enemy for help.
reg613
 

Postby lucky125 » Tue Dec 22, 2009 6:29 am

Thanks for the replys. I will definitely check out the inclined therapy thread.

Jak, I'm sure that some of your suggestions are great. They just overwhelmed me! I am unfamiliar with so many of the things you mention. The alcohol I get, though :wink:

Could you possibly elaborate on the one or two ideas that would be easiest for a simpleton to try?

Thanks!
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Re: purple feet and ccsvi

Postby Rokkit » Tue Dec 22, 2009 7:26 am

lucky125 wrote:Was I in for a shock! HE brought it up! He has been following Dr. Zamboni's research for the past 2 years and is very excited about it. He just met with the chief of vascular surgery at his hospital to try to get him on board to test and treat.

Now that's an encouraging development!
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Postby IHateMS » Tue Dec 22, 2009 7:35 am

i have purple feet. i was MISERABLE. I saw a vascular surgeon, under the guise of getting tested for ccsvi. the surgeon is interested, but insurance would not pay for mrv. i have another appointment in March... so we will try to get test approved again.

for the feet, the doc recommended compression socks and gave me rx for socks. i went to medical supply store. i wanted white socks (athletic). their white socks looked like those for old geezers :P . Anyway, I did get some black socks. BLISS. The socks were about $25 a pair.

My wife calls them miracle socks. i am in a wheelchair, but I have to stay in bed most of the time due to my PURPLE feet... with my feet elevated. If I wear the socks, I can stay in the chair all day. i can go places again. I finally found some white socks without the geezer element. i found them on ebay,,, $10 for three pair and that included shipping. Maybe not the best in the world ... but yesterday after spending 12 hours in the chair with the socks, my feet were a healthy pink color last night.

<shortened url>

The socks have withstood the washer... I am NOT affiliated with the ebay seller... I did find some blue compression socks at Kmart for about $8 a pair.... I did not see any at Macys.

get the correct size!
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chelation cold feet etc

Postby jak7ham9 » Tue Dec 22, 2009 7:40 am

I am about to get edta a couple times a week. Here is some info on desferroxamine (iv iron chelator)and desferone (oral iron chelator) i believe the oral chelator is being marketed under exjade in the us. Here is a trial going on in italy to try iron chelators to improve various neurodegenerative diseases and they seem to have improvements after removing iron...The treatment of systemic iron overload has in recent years improved notably since new drugs and new therapeutic combinations have become available for use. Conversely, therapies for the removal of regional iron overloads on the cerebral level have not been described in the literature.

As it is known, the symptoms resulting from a cerebral iron overload are strongly disabling, reducing the patient's autonomy. Considering that valid therapeutic alternatives of proven preventive and/or curative efficacy in these neurodegenerative diseases do not exist today, the use of lipophilic iron chelators must be considered as a possible therapeutic strategy worthy of deeper study.

Deferiprone is an oral active iron chelator, the use of which is authorized for the treatment of iron overload in patients affected by thalassemia major in conditions of "chelation not suitable for Desferal." In recent years, deferiprone has been applied extensively, demonstrating a good efficacy and tolerability profile.

Unlike deferoxamine, a hydrophilic drug, deferiprone presents chemical-physical characteristics (low molecular weight, favourable octanol:water partition coefficient, neutral charge) that guarantee drug good permeability of mitochondrial walls and the blood-brain barrier.

Recently deferiprone (commercial name Ferriprox) was used in 13 patients with Friedreich's ataxia (FA), also treated with idebenone (an experimental drug with an anti-oxidant action), compared with 9 patients affected by FA but treated only with Idebenone. The 9 patients who completed the 6 months of treatment with deferiprone were evaluated from a clinical point of view using the ICARS Scale (International Cooperative Ataxia Rating Score) before the start and after 1 and 6 months of therapy. They also performed a cerebral Magnetic Resonance Imaging before and after 1, 2, 4 and 6 months of treatment. The results were promising. In fact, after 6 months of therapy, a reduction in iron accumulation in specific cerebral areas involved in the pathogenesis of neurodegenerative disease was demonstrated. The patients also presented a significant clinical improvement confirmed by the ICARS score. Two cases of NBIA treated successfully at our Center, the first of which described in the literature [sic]1.

Therefore the use of deferiprone, despite the possible side effects (such as gastrointestinal disturbances, a temporary increase in transaminases, and especially agranulocytosis found in about 1% of patients treated with deferiprone), currently represents the only possibility for removing and/or preventing the accumulation of iron in the central nervous system, curing and/or avoiding the most severe and debilitating consequences of a disease for which another therapy does not exist.

The Centers that specialize in the treatment of iron accumulation have acquired significant experience in the use of new oral iron chelators over the last 10 years, which permits deferiprone to be used carefully and safely in the three cases at hand. We therefore propose the use of this drug for treating patients who show neurological symptoms that can be correlated with a cerebral iron overload shown through MRI and who have not benefited from other therapies.

Eligibility
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Postby bestadmom » Tue Dec 22, 2009 7:43 am

Amazing, a neurologist interested in CCSVI!

I too have purple feet and they are cold as well. My neurologist said it is common with people with MS. Our calf muscles don't contract properly and the blood pools in our feet since it isn't pumping back to the heart as it should.

He minimized the problem, however he doesn't live with my feet.
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Postby lucky125 » Tue Dec 22, 2009 9:19 am

Jak,

Thanks for the additional info. I also have anemia, so I don't know what the ramifications are for people like me. Too much iron in my brain, not enough in my RBCs. Nothing is ever simple, huh?

Interestingly, my anemia is bad on interferons, and terrible on Tysabri. I stopped Ty about 9 months ago because it stopped working after 2 years of incredible improvement.

I have had one shot of Procrit in Feb to bump me up to normal, and have maintained normal levels since then, although it is finally dropping to slightly below norm.

The Ty worked so amazingly well for me that I am going to give it another try starting in Jan. I have to consult with my hemo about the iron issue. Nothing is without consequences, but the unbelievable improvements I experienced with Ty make it worth another try, even with the anemia. That's why there is procrit!
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CCSVI Testing - go for it

Postby MarkW » Tue Dec 22, 2009 2:37 pm

Hello lucky125,
With the extra info you have been given it appears that the possibility of you getting tested was lost. Please follow up with your neuro and the dept of vasc surg and have the MRV/Doppler test asap. You would be in a great position to have angioplasty after testing. A test centre in Washington DC would be very good news.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 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
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Re: purple feet and ccsvi

Postby Richardk » Tue Dec 22, 2009 3:36 pm

He definitely thinks that my purple feet, and those of so many of his other patients, has to have some relation to ccsvi. He is excited to have a plausable explanation for this common phenomenon in MS patients. He explained to me that, for all intents and purposes, the brain is an extremity, too. If too much blood is getting stuck up there, it can't get to the other extremities that need it. At least that is my non-MD understanding of what he was trying to say.


Super to hear of your purple feet....I thought I was the only one, and am a source of endless gallows humour to my kids....in hindsight, if purple feet is a common symptom, why did it take so long for researchers to ignore this symptom, indicative as it is of a vascular issue....I remember my original neuro, very prominent in the research community, pressing his finger on my leg to see how long it took for the white mark to disappear...he obviously had some curiosity
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Postby SaintLouis » Tue Dec 22, 2009 8:50 pm

My feet aren't purple however they are always freezing, as are my hands. Always. I too struggle with anemia and until recently I'd always assumed it was what was causing my cold extremities...but maybe not?

And I struggle with how much iron to take now, I don't want all the excess I swallow to get deposited in my brain! But I have to have iron in my blood, no way around it. Finding the happy balance...
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Re: CCSVI Testing - go for it

Postby lucky125 » Tue Dec 22, 2009 8:58 pm

MarkW wrote:Hello lucky125,
With the extra info you have been given it appears that the possibility of you getting tested was lost. Please follow up with your neuro and the dept of vasc surg and have the MRV/Doppler test asap. You would be in a great position to have angioplasty after testing. A test centre in Washington DC would be very good news.

MarkW

No sir! I am still working on getting tested, and my neuro is just getting me one step closer.

He believes that in addition to Ty's ability to prevent T cells from crossing the BBB, it has some positive effect on the veins, too. I wish I could remember exactly what the relationship is, something about making them "less sticky" so that blood flows easier even through stenosed veins. Sorry, I don't know if that is exactly right, but it is something like that!

This just made me realize that I shoould check with him about getting testing done before I restart Ty if he really believes that it positively impacts the veins. I don't want it to muck up my test!

I'll keep you posted!
Last edited by lucky125 on Tue Dec 22, 2009 9:07 pm, edited 1 time in total.
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