Is this something? (multiple sclerosis)

I've been reading about a doctor, Dr. Paolo Zamboni in Italy who has a totally unique theory on Multiple Sclerosis. This doctor wanted to find out more about it because his wife has it. No one really knows why MS happens but this Dr. has done some research. All of his studies have shown that MS patients have a blockage or malformation in the blood vessels in the veins (the jugular and azygos veins) that drain blood from the brain. He calls the blockage Chronic Cerebro-Spinal Venous Insufficiency or CCSVI.

Since there is a blockage of the pathways that remove excess iron from the brain, the iron builds up blocking and damaging these crucial blood vessels as they rupture they allow both the iron itself and the immune cells from the bloodstream to cross the blood brain barrier into the cerebrospinal fluid, there for allowing the immune cells direct access to the immune system and that's when they begin to attack the myelin sheath of the cerebral nerves, and then blamo, you've got MS.

If this is true, then this would be a cause and by the way, it would tend to indicate that you are born with a predisposition although a Vitamin D deficiency in early childhood would be a contributor - but it gets even better, if this is true it would be simple to go in and fix the root of the problem, that doesn't mean that you could repair permanent brain damage and perhaps not some of the disabilities that some people have (it is possible it could reverse a lot, could you jump up out of your wheelchair, see again, or speak again once you have reached that point? I don't know) - but all a person would need was a simple operation in the neck and get a balloon or stent to open up the areas. This would be amazing! It's very low risk - there is a risk, there always is but not like the stem cell transplants that they are now recommending for some MS patients which has a 5% risk of death! So I really hope this is true, I would go get it done in a heartbeat. Especially considering that lately I have been having drastically more muscle spasms and pain (I'll be seeing my new neurologist about this soon). The problem is that it's so new, the FDA might have to approve this and they are no where even near that point, people are just beginning to buzz about this. But the people that had the operation felt better immediately and have lasted this way for a couple of years. One thing I do want to point out is that MS can come and go until usually for most of us the disabilities stick (although a small percentage do get away with it) and this makes it hard to read research results as the nature of the disease is not consistent.

Now granted no one is behind this, it's too early, it goes against everything we thought before and it would also really blow the top off of all the big drug companies that supply the injections for MS (my Avonex injections are over a thousand dollars for a one month supply, that's four injections - we only pay a small % our insurance picks up most of it - I don't know how much the alternative drugs cost). In fact the MS Society isn't coming forward to support this research, they are being very cautious and beyond that - have not even said it is worth looking into, why? They have a lot of information on their site about Rebif, Avonex and Copaxone. Do they have a mutual relationship with the big drug companies? Or perhaps they just don't want to put any information out there that we may find out through further studies is not true.

I usually am quite reserved in my reaction to these articles - they tend to walk off quietly into the night. One has to be careful at this early stage. I've read many other articles that said this might be "the one" and then the research discovered it wasn't, but the more I read about this, the more it makes sense and the more excited I get. I have been very emotional about this, I think there might be something to it, I hope that there is. If so I want to do all I can to try and push this into becoming available in America. They do have a couple studies here to determine if MS folks have the blockage (they are not getting the procedure), one at Stanford and one in NY - but the treatment at first might go up to Canada, if it turns out to be what we think and I hope it is. The problem is time with MSers, while we wait, permanent damage could occur so I really hope some one gets a move on! I have heard that symptoms cleared in people who have had the procedure in Italy but I haven't read much about the brain lesions on MRI results, I would be curious to find out more about that. Although in the news video below the doctor does say his wifes is clear, that you wouldn't even know she had MS. This would be incredible, as we all have brain lesions in our MRI scans that move about, grow, change shape, increase etc. since we are diagnosed. Anyway, I hope it's really something so that I haven't rambled on about nothing and so that my hopes and the hopes of many others could be fulfilled. I'm going to ask my if I can get the doppler test to see if I have this - if I do I am going to try and have the surgery, if they don't let me then I will try and find a way to move this forward, however I can, for all of us.

A couple if links:

News coverage video (this video will appear to end but will continue multiple times)
http://www.ctv.ca/w5/

Here is the published article:
http://jnnp.bmj.com/cgi/rapidpdf/jnnp.2008.157164v1

I found this MS forum on the subject:
http://www.thisisms.com/forum-40.html

And these videos on Youtube (irishbear76 has the best video):
http://www.youtube.com/results?search_query=CCSVI&search_type=&aq=f

A new look for us ~ American Gothic

Body Signals

I just saw a story on Headline news about a development that is being targeted for use at the airports. It will detect your movements to see if you are fidgety, blinking a lot and will monitor other bodily functions (temp, pulse, breathing) that are indicative of someone who is nervous. The theory being that if you are a danger to the airport you would show these subtle signs. Every day, all day long I have this internal fight with my body to remain still due to my multiple sclerosis, so you can imagine how that would read to one of these machines in an airport, especially considering that stress and change increase these symptoms for me - which traveling of course is going to do. But the biggest concern would be if they evaluated my movements and did a more thorough investigation, this would increase the stress and could induce even more of the same or even a full blown MS exacerbation - which could be more serious, require a 3 to 5 day IV treatment, and may or may not get better.

There are many other conditions that have problems with muscle spasms, and movements - and also many that are doctor prescribed to avoid stress like mine. None of these considerations were mentioned in the news story, I know that airport security is a very serious issue but I hope that an innocent person doesn't have to become more debilitated in the process.

This week only!

I'm so excited! My animation has been selected by Hewlett Packard as a semi finalist, but to make it as a finalist, I need your votes! You need to be registered at youtube (which is free) http://www.youtube.com/create_account then make sure you are signed in and go to http://www.youtube.com/hp - (to make sure you are signed in look at the very right top corner of this page to see your user name.) Then up at the top you will see a row of blue tabs, click the "view + vote" tab, you will see my video there among others. I am wearing a black dress with my blonde pony tail down the front of me, the video is called "Who Am I". Click this picture icon to see my video. It is a video about my being a computer animator. After my video pops up you will see on the right side of it that there is a thumbs up and a thumbs down, thumbs up is what you want to click to give me your vote. You are allowed to vote one time a day, all the way through (and including) Sunday. However you are not allowed to vote more than once a day as it is against the rules. But please feel free to spread the word to your friends and family as every vote counts! The prize is 40 thousand dollars and considering my current financial situation you can imagine this would be a wonderful prize indeed. Please vote for me every day and I thank you so kindly for it. Thank you, thank you, thank you so very much!!!

News article

A friend sent this very interesting article to me today: McGill/JGH researchers successfully reverse multiple sclerosis in animals
Of course we must always wait for further research on these news breaking items, but it does sound exciting. Gina~

Update

Jim continues to do well. If you recall in my last post I was switching from the prefilled syringes of Avonex for my weekly multiple sclerosis treatments, to the powder kind that you have to mix up yourself with the hopes that the side effects would not be so severe. And guess what? It's true! For me anyway. Of course it doesn't take all of the side effects away, I can still feel theAvonex, my legs are weak and stiff, and I am tired, but my face does not hurt, my teeth do not hurt, I do not have charlie horse muscle aches all over, nor am I in bed the entire day unable to do anything! I have done this 3 weeks in a row now, so I have collaborative results. I give the experiment a passing grade. Let's keep our fingers crossed for even better treatment and that the pill form moves through clinical trials quickly, but for now I am very pleased about the switch.
PS I have new art/animation stuff here.
And if you haven't watched my most recent animation The Offering yet, come by here. I think (I hope) you will really like this one.

Something new

Jim's health is still maintaining well. I've been on my weekly injections of Avonex for a year now, as long as I've been diagnosed with multiple sclerosis. Unfortunately I have always felt very sick the day after my injections. I have been using the prefilled syringes, but had read at the online MS message boards that some do better with the kind you need to pre mix yourself. I was talking to the nurse on the phone line of the manufacture of Avonex and she told me more, that initially Avonex only had the kind you had to mix yourself, and because people found that inconvenient they took that off the market and replaced it with the prefilled syringes however they started getting calls about bad side effects, including reports from doctors. So they put the original powder version back up along side with the prefilled, so the two are available. It is not always the case that switching can help a person with the side effects, but it has been the case for some. So I decided to switch and indeed I did receive a shipment even before my most recent injection on Friday night but I had to still use the prefilled because I can not use the new kind before the nurse has come for a home visit to provide instruction. I am hoping I can get it scheduled for this week! While I am being very honest with myself about the possibility of it not helping, I am happy to have the hope and the potential that I may get a day back in my week. If it doesn't work out I will have at least tried and will know the result, if it does work out then I will be a very happy girl!

P.S. I have a new animation.