Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby jimmylegs » Thu Jan 14, 2010 5:23 am

dlb, could be a 'periorificial parakeratotic lesion'. i had one, different orifice :S
i thought it was something else originally, but when it suddenly disappeared after i identified and corrected my zinc deficiency (never to return, to date) that's when i realized what it had been.
just throwing that out there for you to think about.

in zinc deficiency,
Skin findings include:

•Red and inflamed patches of dry and scaly skin, particularly around body openings such as the mouth, anus, and eyes, and the skin on elbows, knees, hands, and feet. It may look like atopic dermatitis.
•Patches evolve into crusted, blistered, pus-filled and eroded lesions.
•There is usually a sharp demarcation between the affected area and normal skin.
•Skin around nails becomes inflamed (paronychia) and there may be nail ridging.
•Diffuse hair loss on the scalp, eyebrows and, eyelashes. (JL - i had this too, lost a lot of eyelashes)
•Secondary infection with Candida albicans or Staphylococcus aureus (JL - check.. and, check)
•Red glossy tongue and mouth ulcers
•Impaired wound healing
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Postby jimmylegs » Thu Jan 14, 2010 5:26 am

wow i missed the various colds thing on first readthrough.. you are sounding like a zinc poster child dlb!! maybe time for a lab test?
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Postby dlb » Thu Jan 14, 2010 5:52 am

JL,
I was just thinking about labwork... I have an annual review with my neuro & she has indicated that she wants to check my vit D levels. I currently take 2000iu per day & I had asked about 6 months ago about bumping that up (a suggestion by my GP). Neuro wants to check the D in Jan(when our sunlight is the poorest). I was just going to ask you what else you would suggest that I have checked, if you don't mind - looks like zinc levels, maybe?

My diagnosis was July 29, 2005, so the skin/ colds thing was going on a few months prior to that.... (RRMS), EDSS score of zero (as of March, 2009) - I don't feel as though that has changed. I've only had 3 episodes - last one was Sept, 2006 - so far very fortunate, but I try to stay healthy & rested. I take copaxone, vit D, omega 3, calcium & SierraSil (a joint relief thing). I have to take the time to look at some of the links you've posted because I think you are pretty knowledgeable about supplements. Thanks for the help. BTW, I do get lots of colds, always with sinus issues & seasonal allergies that affect sinuses, post-nasal drip, then related throat/chest infections - is that zinc related do you suppose - absolutely no more skin things going on tho'. So weird back in 2005 - I still remember how very horrible I was feeling at that time, really piqued my interest to read others skin issues.
Have a great day...
D
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Postby jimmylegs » Thu Jan 14, 2010 9:20 am

sure thing d, i'll get back to you with a link or a pm or something, but i have to run off to a mtg just now. back later!
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pms

Postby kenneb9 » Thu Jan 14, 2010 7:46 pm

sorry to bother here but can someone help me. I have pms stuck in my out box and can't seem to figure out how to get them sent.
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Postby dlb » Thu Jan 14, 2010 8:00 pm

kenneb9,

Took me awhile to figure this out too, but I think they stay in your outbox until the recipient reads them. Then they are in your sent box. If you glide your cursor over the icon to the left - it says some thing like "unread email" something to that effect
Deb
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Postby eve » Fri Jan 15, 2010 3:52 am

Coming back to DLB's post concerning skinissues...I have a contious peeling nose for years now! So all my extremities so to speak are cold and have skinissues. Also my nails are getting worse. This could be down to psoriasis but like I said, supposedly it is odd I do not have any other parts of my body effected.. Also when I suffer from relapses my skin gets horrible acne while normally my skin is clear.

Anyway, I have scheduled an appointment with my neuro on feb 18th. I have read on the Dutch forum that someone else went to a collegue of his at the same hospital. He had not heard of ccsvi yet but he was excited reading the printouts and said he would look at them with a vascular specialist and radiologist and see if they could scan. I have not heard anything since then but I sure was encouraged reading it. My neuro was never a big fan of any treatment he had to offer so I think he will hear me out.

Sure hope Buffalo will have their results by then. Thank you all for all the info on this forum.
dx 2002,RRMS,  suspected begin of MS 1978 (age 10)
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Postby jimmylegs » Fri Jan 15, 2010 4:53 am

eve, i have skin probs too and am working on them but they improved dramatically with zinc deficiency correction. i'm still trying to figure it all the way out. my nails react to supplements too but i am not sure which one or ones in particular - i just know that if i slack, nails get bad and even start to separate from the nail bed. if i take all my stuff, nails stay smooth and stay on. what all that has to do with CCSVI, i have no idea.
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CCSVI

Postby Squibbles » Fri Jan 15, 2010 11:40 am

Hi Everyone

I'm new on here but have been suffering from MS since 1988!! Anyway, the reason for me joining this sight is to find out more about CCSVI - you all seem a very knowledgable group of people!

I've read the posts with interest and personally I can't wait for NICE (UK) to approve the treatment as time (for all of us) is running out.

So, would anybody be able to give me the name & phone number/email addresses of doctors that are currently practicing the treatment for CCSVI?

Thanks! :)
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venous angioplasty

Postby kenneb9 » Sun Jan 17, 2010 6:26 pm

More reasons to go directly to vascular surgeons. They have been performing
venous angioplasty.

Also, We need to know how common a procedure venous angioplasty is among patients with other venous conditions and how successful the procedure has been searching this subject I found the following two links.

http://nih.kramesonline.com/3,S,85547

http://www.rctradiology.com/venousaccess.html

Perhaps more people can search this subject and find symptoms that have been treated successfully for other patients that mirror symptoms that MS patients have.
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Postby acol » Mon Jan 18, 2010 4:12 am

Hi Squibbles

Welcome to this marvellous site. I joined in early October and there is a wealth of information for you to read. A good starting point would be to look at some of the Sticky threads at the top of the page which lists the sub-topics
http://www.thisisms.com/forum-40.html

You may then wish to have a look at this thread which deals with the first UK procedure http://www.thisisms.com/ftopicp-71411.html#71411

This thread will also give you a good idea of the work which people are doing to try to bring the procedure to the UK http://www.thisisms.com/ftopict-9366.html

If nobody takes any direct action it could be years before NICE approves this treatment - if EVER! There are huge hurdles of bureacracy and vested interests to overcome before CCSVI is commonplace - especially in the UK.

However, don't be disheartened. The information is available to make changes.
Nigel
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CCSVI sumamtion

Postby kenneb9 » Mon Jan 18, 2010 4:09 pm

excellent blog post summation and links http://wwwmsviewsandrelatednews.blogspot.com/
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Postby acol » Mon Jan 18, 2010 4:21 pm

Hi kenneb9

I am sure that your link will provide very helpful information. However, as a word of warning I would not get too excited about getting help from interventional radiologists - certainly from a UK perspective. I think that Wobbly1 went down this road on another thread and e-mailed the National (or was it International) society with no good result. I e-mailed one of its members - Professor Andreas Adam, but never got any response.

Others may be more fortunate than we were but dont hold your breath....
Nigel
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Postby acol » Tue Jan 19, 2010 4:28 am

I checked back. Wonky1 e-mailed the British Society of Interventional Radiologists http://www.bsir.org/content/Default.aspx on 28 October. As far as I am aware nothing resulted from this contact - certainly not from my enquiry. You could always ask Wonky1 for clarification. Personally, I thought that his approach stood more chance of success than mine.
Nigel
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CCSVI Case

Postby kenneb9 » Tue Jan 19, 2010 2:33 pm

Follow a CCSVI case AT http://iamsickofms.blogspot.com/
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