This Is MS Multiple Sclerosis Community: Knowledge & Support

I know how "bad" it is to say EXACTLY where you are from on forums and the internet....lol......but in this case, can we be a bit more detailed about it?

I am 35 and have been diagnosed with RRMS for 10 years. I live in BC and want to talk to other fellow MS'ers who live in BC - especially those that have had the CCSVI treatment.

Im from BC. Vancouver Island to be exact. No I havent gone through ccsvi treatment.

Thanks birdie......I am from the Okanagan.....and really really researching getting the procedure done....would like to find someone who will acoompany me on the journey...

Hey, i`m in Vancouver, male with MS(secondary progressive). I just joined like. literally moments ago. Am going to post an introduction, just couldn`t resist reply to my fellow BC`er first. I am amazed and happy to stumble onto this site, looks to be a wonderful resource and community tool for all us lost and wandering(or is it stumbling?hehe) sufferers. Let`s chat or somethin soon, go to my intro post and learn more about me. Hope to here from ya soon.

Great to have you on here Mercy!! So much info, so much support.....how did you find us? Have you heard about ccsvi long?

_________________
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos

I just spent half an hour typing a reply to you about the surgery, but due to my lame wireless excuse for a network, it went offline and erased the whole thing when i tried to post it. Ok, i have some social stuff to attend, but i will log on later and give you the info on what i know and what the MS Clinic i use just told me, as i went last week for the purpose of getting to tha bottom of the procedure... but me late and sorry to leave you in limbo but i will get back to you with what i know later............... Mercy

Nothing but internet problems on my computer, but seems ok now. Sorry to take so long to respond. I take it the procedure every one is hyped about is the feeder vein operation done by Dr.Zamboni.
Well, i went last week to see my neurologist at Burnaby MS Clinic, Dr. Vorobychek, whom i consider one of the best in her field, just to get more info and her opinion on it.
Unfortunately,she has many concerns about it. She says, to her, the science isn`t adding up. She, of course, would love to see it be as real as the claims, but it isn`t scientifically sound to her.
Her first concern is that, say the procedure was allowed in Canada. Here there would be a collaborative effort between your family Dr.,your neurologist,the surgical team and yourself to determine if you are a good candidate. But there isn`t that. All it seems to be is one guy who assesses, commends and performs the operation,all for a certain $$ fee. She says if they were so hot on sharing the miracle with the MS community, why aren`t they sharing it for free? Also, the procedure itself is causing concern, as that there is no data as to what expanding a feeder vein may do do a person in the future.It is not the same as unclogging a blocked artery, they are actually widening the vein and there is no data on how that will effect a person in the future.
The biggest concern is offering up hope to desperate people without valid science backing it up.
Still, she is not wholly dismissing it yet, and is thoroughly checking all the info she can get. But as it stands, she can`t responsibly back it up as there is no evidence or proper research as of yet to make her want to endorse it.
Sorry to be a bringdown, but i myself trust her opinion and for that reason alone, i will respect her views.
Anything else i can share feel free to ask.......... Mercy

Dr. Freedman is my doctor and as you are all aware, he is very much against it, for now. My nurse has advised me that the procedure is very risky as people have died on the table during the procedure. Anyhow, I would look forward to doing it once the kinks are ironed out and it is an established proven method of overcoming this disease. I am tired of being tired.

Sorry, but I do not have anything nice to say about Dr. freedman. Perosnal thing. He is TOTALLY against it but yet requests research dollars for it.

I am not a fan of Freedman altho I can understand his opposition and reluctance.

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35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos

I haven't heard of this before. Do you have a reference?

NHE

My appt is later on this month. I'll check into it.

I also took a quick look at the ccsvi thread on the general discussion page and there is a letter posted from the Doctor himself and if you can get around all the medical terminology he does state that in some cases the patient gets worse after procedure. Also says that there is no noticeable difference after the operation in some cases. I know we are all "tired of being tired" but let`s try patience also until some real facts come to light through proper channels.It is the lack of real evidence and ommitance of failure that worries my neurologist. Myself i have heard so many "miracle cures" in the 14 years since diagnosis i am now always wary. Anyone remember Bee Venom Therapy?
The net also is chock full of miracles and testimonials and in the end,they all want $$$ for the knowledge. If i stumbled upon an apparent cure or treatment, i would post it for free, if only i know myself first hand how bad this condition is. It really is the aspect of capitalising on peoples hopes and fear that is sending up the yellow flags(again). And if the prophets are false, makes me wonder how manipulating and insensitive as a society we have become.......................

Another Okanagan person. Spouse of pwMS.
Freeman is he only in it for himself? He should self reflect on why he became a Doctor. If it was for money, he should quit. Plain and simple.
That nurse should also stop spreading misinformation with regards to angioplasty. Do your own research.
People die in hospitals, that is true. How many healthy people are in hospitals?

Just remember, Dr Freedman is not the only MS MD or neurologist taking a slow approach to this procedure.

Well, i`ve not been logged in for a bit,but am back to post another reply.
I started on a new drug..... 4-Aminopyridine. And i think it`s starting to work. Very drowsy at first and don`t take on empty stomach, got heartburn and i never get heartburn. But take with food and it`s ok. You have to increase dosage in increments.... 1 pill a day for 7 days,then 2 pills for the next 7 days then 3 pills a day thereafter. I am starting 3 pills on Saturday, so in short time after that i hope to realise the full benefits. Expect a few days of drowsy after each incliment but they fade fairly fast(a day or two). Am noticing improvement now, less stiff and spastic and hope it only gets better, which they say it should after my body becomes more adapted to it. Will keep ya all posted and if i see further positives, i will dedicate a thread to it soon.
I see some more opinions on ccsvi were posted, and one thing i can add is if anyone else has noticed that there seems to be a bit of a stand-off between the procedure and neurologist camps. In the way that the ccsvi people are calling the neurologists as being "head in sand" over the procedure. And then the usual drug pharmacuetical companies conspiracy that they don`t want the world to know because it inhibits their profit agenda. And that`s not to say that doesn`t happen, too many degrees i think that is somewhat of a truth. but i am wary of them using that angle, as i believe Dr. Voyrobychek, my neurologist, as one of the most sincere and agenda-less professionals in the 14 years i have been dealing with MS.
She didn`t dismiss it at all, she actually spent a good 1/2 hour discussing it and was very versed in the procedure and with the science that she in the end, doesn`t believe in. There was no sign of her ever dismissing it point blank and every indication that she had thoroughly looked at all angles.
So for now, i will respect her opinion and take a cautious approach until more positive, and less conspiracy based information can be obtained. But you are welcome, and entitled to a differnt opinion. This is just mine.
Until next time, Mercy over and out