Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby Lyon » Sat Jan 02, 2010 5:40 pm

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Last edited by Lyon on Mon Nov 21, 2011 9:04 pm, edited 1 time in total.
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Psoriasis & MS

Postby suenz » Wed Jan 06, 2010 4:34 pm

Has anyone had any problems with Psoriasis since being dx with MS?, on their head, with severe itching off and on - It disrupts my sleep and my nerves get very aggravated by the burning and itching.

Just wondering if there was a connection at all with iron deposits in the brain and the venous blockages (CCSVI) that might be linked or cause this problem in someone with MS.
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Postby mangio » Wed Jan 06, 2010 6:24 pm

chromosome 6 is one of the main genes thought to contribute most
to the development of ms as well as many other autoimmune disorders.
Many people with autoimmune disorders often have 4 or more because
of the mutated Human Leucoyte Antigen on chromonsome 6...getting
some nice sun (if possible) is supposed to help both? uhm...
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Postby CNClear » Thu Jan 07, 2010 8:19 pm

I have had a skin problem that has some of the same characteristics as psoriasis, but after many tests and biopsies, it was concluded that because of the ANA test results, it was something autoimmune, but despite a lot of tests, they can't narrow it down...the drs. looked at lupus, pemphigus, some type of scleroderma...??? It starts out like little blisters and then itches real bad, the skin is very fragile and if the blisters break, it spreads, turns into little ulcers, then eventually scars over with tough skin something like a callous...the sun does help, sometimes more than others...but from doing some research on my own, I have concluded that it IS, I believe, tied somehow to the CCSVI...unfortunately, I can't put my hands on my research that led me to that conclusion, at the moment, nor can I clearly remember my reasoning, deductions, etc. but when I find it, I'll post it. My dermotologist has given me Minocycline and it seems to be helping more than anything else has so far...

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Postby Johnson » Thu Jan 07, 2010 11:26 pm

CNClear,

Interesting that the minocycline helps... if it is related to CCSVI/MS, there is some work with anti-biotics and MS, according to my foggy data bank.
My name is not really Johnson. MSed up since 1993
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Postby eve » Fri Jan 08, 2010 1:40 am

Not sure if I can post here as it's a Sticky (not sure what the 'rules' are )- but in regards to Suenz'question.. I have psoriais too, on my head, the palm of my hand and under/on my feet. Nowhere else on my body which is supposedly a bit odd. I was diagnosed with psoriasis years before MS, but I am sure my MS was already present at the time.
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Re: Psoriasis & MS

Postby Dovechick » Fri Jan 08, 2010 2:12 am

suenz wrote:Has anyone had any problems with Psoriasis since being dx with MS?, on their head, with severe itching off and on - It disrupts my sleep and my nerves get very aggravated by the burning and itching.

Just wondering if there was a connection at all with iron deposits in the brain and the venous blockages (CCSVI) that might be linked or cause this problem in someone with MS.


My following observations are just that, observations, and not medically recognised or anything at all scientic, but is this not how we find things out?

The female line in my family appears to be suffering from something I have recently discovered is called Connective Tissue Disease (CTD), sometimes called Non Specific CTD because it can manifest anywhere on the body, skin, cartilage, hair, eyes, tendons, ligaments, veins. So in our family I can trace this to my grandmother who had problems with eyes, hair and cartilage, my mother who has problems with cartilage and veins, myself who has problems with cartilage, hair, skin and veins, my sister C who has problems with hair, cartilage, ligaments and tendons, my sister D who has problems with cartilage and skin, my niece L (daughter of C) who has problems with eyes, and my daughter Ella who has problems with skin (mainly on hand and feet) and MS (she also has a scottish father). Any connection? Who knows... It would take an enormous amount of effort and research to prove anything but it is interesting...
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby cheerleader » Fri Jan 08, 2010 9:09 am

Dovechick...
I've been researching this, since my hubby's sister has Ehler Danlos, a connective tissue disorder, and his veins are very "different" according to his doc. In Bologna, Dr. Gabbiani from Geneva discussed the change in MS patients jugular tissue from collagen 1 to collagen III...this happens in connective tissue disorders, as well. All about the collagen. Collagen III tends to be stiffer, and all the MS jugular tissue sampled had this switch from 1 to III. Since there are no "cures" for connective tissue disorders, it will probably mean gene therapy someday. But interesting, none the less.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Psoriasis MS CCSVI and Inclined Therapy

Postby AndrewKFletcher » Sat Jan 09, 2010 2:57 am

CNClear wrote:I have had a skin problem that has some of the same characteristics as psoriasis, but after many tests and biopsies, it was concluded that because of the ANA test results, it was something autoimmune, but despite a lot of tests, they can't narrow it down...the drs. looked at lupus, pemphigus, some type of scleroderma...??? It starts out like little blisters and then itches real bad, the skin is very fragile and if the blisters break, it spreads, turns into little ulcers, then eventually scars over with tough skin something like a callous...the sun does help, sometimes more than others...but from doing some research on my own, I have concluded that it IS, I believe, tied somehow to the CCSVI...unfortunately, I can't put my hands on my research that led me to that conclusion, at the moment, nor can I clearly remember my reasoning, deductions, etc. but when I find it, I'll post it. My dermotologist has given me Minocycline and it seems to be helping more than anything else has so far...

Lisa


Yes I know I am not supposed to post anything about my research, "which according to some" is unrelated to CCSVI?

But have to add my observations to skin lesions contaminated with very high levels of potassium and sodium. Perhaps heavy metals are accumulating in the skin and can't move away from the dermis and epi-dermis because we are sleeping flat? A little like the iron and other heavy metal deposits that can't move away from the damaged areas of the nervous system and brain in ms?

Helen's photographs before during and soon to come after Inclined Therapy Results can be found here:
http://www.thenakedscientists.com/forum ... pic=9078.0

:wink:
Find us on Facebook.com/InclinedBedTherapy
IBT website: http://inclinedbedtherapy.com
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CCSVI

Postby kenneb9 » Wed Jan 13, 2010 2:41 pm

These discussions are fantastic. My conclusion from them is simply go to vascular surgeons and tell them you think you have venous blockage and ask them to investigate and treat. Therefore bypassing All this hurry up and wait for clinical trials etc.
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Postby JoyIsMyStrength » Wed Jan 13, 2010 4:45 pm

kenneb9, boy this is going to sound flippant and that is not my intent. OK? Ready?

Here goes: Sorry but if it were that simple we would not need to discuss this all day and all night. (I think I'm stuck to my computer. Help!)

Truly I do not mean to sound unkind. I hope you do find a doctor who will listen. But as you will soon see after learning more about this, it's not something the average doctor or radiologist will even be able to detect.

Sorry I couldn't be more positive. On a brighter note, you have come to the right place and we are a very hopeful bunch. 8)

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ccsvi

Postby kenneb9 » Wed Jan 13, 2010 5:33 pm

Well Joy after waiting two weeks for a reply from Stanford we called a vascular surgeon & made an appointment. It took just over one week to get in. In advance we told the receptionist a link to tell about CCSVI. We went yesterday and he listened told us he does surgery's all the time on veins and arteries and thanked us for the new information.He immediately scheduled the Doppler ultrasound and the MRI and MRV for the 25th of January. His follow up consultation will be the 28th. A total of less than 3 weeks from 1st phone call. In the mean time I heard back from Stanford and it will be months before we could get in. I say we because it's my wife who has MS. I am just saying that lots of information can be digested and a straightforward action can be taken. Call vascular surgeons in your area.
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Re: ccsvi

Postby cheerleader » Wed Jan 13, 2010 5:40 pm

kenneb9 wrote:Well Joy after waiting two weeks for a reply from Stanford we called a vascular surgeon & made an appointment. It took just overone week to get in..... Call vascular surgeons in your area.


YES! Nice work, Ken. This is what we've all been saying over and over...and it really works. That's how Jeff got to Stanford in the first place almost a year ago. Together, we can help each other.

Make sure to print out the doppler and MRV protocols. Not that your doc won't know what to look for, but just to show he/she what Dr. Zamboni and others are doing to verify reflux and stenosis. I've posted the testing protocols here:
link to protocols
please let us know how the testing goes-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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CCSVI

Postby kenneb9 » Wed Jan 13, 2010 5:52 pm

Thank you the first time I heard of CCSVI was Dec. 16th; by the 20th I had found this forum and your discussions of Stanford I called Stanford immediately. They are really going to have a backlog now Dr. Dake said he is going to study more the advantages of stents vs and or angioplasty. Then he will study a large group with images before any procedure. This will be months. I think with Haccke, Buffalo and Stanford forming long ques people need to take the bull by the horn go direct to local vascular surgeons.
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Postby dlb » Wed Jan 13, 2010 9:02 pm

To everyone that has posted various skin disorders. I find this to be a fascinating issue because several months before I had any of the "typical" MS like symptoms that prompted my GP to send me for testing, I was experiencing some very unusual skin problems. I normally have very clear skin but I had a series of weepy, blistered, itchy skin that appeared on my face just below the side of my nose. (CNClear - it seems that it must have been similar to what you described) I was treated as though it was eczema & it got a little better, but it just kept re-appearing and "drifting downwards" slightly from where it originated, until it was just below the corner of my lip. I also had weird bumps around my eyes - not pimples and they were evenly spaced & on both sides of my face. I was so sick with various colds at the time that I rarely left the house not that I would have ventured out because I looked like a lizard. Finally, my regular GP who had been doing his usual aids related work in Africa came home & he thought I had rosacea & put me on a 2 week cycle of minocycline, then some salve that is used for rosacea. In the end, I don't think that I had rosacea, as my skin has righted itself completely, but after I was diagnosed, I always said that this whole period of time was when my immune system went screwy - the start of my MS. Now we are questioning the whole auto-immune idea but it is so interesting to read about others with skin issues going on. Incidentally, when I told my neuro in the very beginning about this whole skin thing, including the minocycline treatment, he got very, very excited and told me that the mino... was definitely not going to hurt me. A short while later I found out that they were, at that very time, doing a clinical trial testing minocycline on MS patients.
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