This Is MS Multiple Sclerosis Knowledge & Support Community

dunkempt wrote:

thornyrose76 wrote:I actually yesterday received a letter from the MS clinic here in Winnipeg, there having a special meeting next week, the discussion about ccsvi...there basically saying what other clinics are saying, continue on with therapies that don't really work.

Yes, the MS Clinic voice mail spends about two minutes saying "Please leave a message about anything that DOES NOT involve ccsvi"

But a pharmacist told me there was going to be some Big Name guy (name not provided) and wouldn't it be exciting to hear what he will say? I suppose it would be too much to hope that will be our friend Dr. Omar Khan from Wayne State speaking on "Emerging Therapies" as Shannon, reported he did in Detroit?

That would almost make it worth going to just to see if his schtick had changed.

But the letter itself seemed to promise it was just one of those public meetings designed to control the message. Early days, small sample, can't extrapolate, go back about your business. No we won't run tests on just 5 volunteers as a pilot project, that couldn't be done for (mumbledy-mumbledy) reasons.

And to be honest, it IS early days. And the MS Clinic has only helpful, caring, and as far as I can tell upfront with me about, for example, the only limited help the various injections might provide. But they're operating out of a bureaucracy, and I would rather medicos generally be more cautious than not, so I’m not without sympathy for their position what with all the hundreds of patients in Manitoba calling and asking to be put on non-existent trials...

But for pete's sake, for the cost of putting on this meeting they could run MRVs on a few volunteers, and see if that warranted testing a few dozen more ... and so begin adding to the sum of knowledge rather than working to slow the process down...

-d

More people in the medical community should think outside the box. Yes, they have to be careful, but the opposite can be said meaning, they are too slow to react, and when our lives hang in the balance, it can make everyday life, and with each day that passes, more of a chore.

I know how everyone feels, I'm classified as RRMS, but I'm starting to have some slow progression between attacks. Which scares the living daylights out of me. Not to mention my balance and feeling in my legs. It feels like i'm walking on squishly ground even if its cement. If i try to stand still I sway like being on a boat in the ocean. I'm pretty sure another couple years and I won't be walking.

MS or not, if we have these vascular problems, they should be fixed should they not? Why do they need to run trials on this... If someone doesn't have ms and they found the same thing in legs or arms etc. They would fix them without issue. Just because we have MS they want to run trials to see how effective the procedure is. Even if they had no effect on MS they should still be fixed.... Them running long trials is just plain wrong in my opinion. Basically they are playing with our lives. The increased risk of stroke alone. I'm sure MSers have a much higher risk of stroke. But because of a pre-existing condition they consider us sickly and don't pay much attention to the numbers.

If MS clinics and dr's really cared. They would be testing us all right now to see if we all really have these defects in our necks and spine. IF most of us do have it, we should be in line to get fixed up.

Like others have said we need to push this issue now. We need to make it heard. We need to make such a fuss that they just fix us so we will shut the h*** up. We can't let this get dragged on and give the drug companies time to shut this up. So they won't lose the billions they suck off of us every year with very in-effective drugs.

Getting politicians involved might help though. As the government here in Canada pays for all our MS drugs, besides Tysabri. One procedure to help us out and the probability of getting off these expensive drugs. Should be a big opportunity to save alot of $$.

I know I know, I rant.... But it feels good ;)

[I dont know if i am doing this right but i tried the web site fro the instructions on how to do the ultrasound that you posted from germany and it is not available anymore.it seems that they took it off...would you be able to email me this information if you have it? I am going to my neurologist next week and would like to have something to hand to her..but I think that everyone is putting the breaks on and no one is willing to just jump in and do things without more information...

C3Glo wrote:Has anyone gone to False Creek Surgical Ceter in Vancouver to have the MRV & Ultrasound done??? What were your results? Did you feel like they knew what they were doing? I am thinking of going there to get it done & want to make sure they know what they are doing. From my understanding there needs to be specialized training to do the scans properly. If anyone can give me some info I'd appreciate it! Thanks!!!!

Hey C3Glo,

I have spoken with False Creek's ultrasound doctor, ultrasound tech, and MRI manager. I posted what the doctor said on a Facebook forum:
<shortened url>

One of the members of that forum had her MRV done last week. She also is posting about her experiences.

The doctor said they have done scans on people severely immobilised who feel this is THE answer and think the disability will reverse. He wanted me to be clear to people (I run the Facebook page for BC MS folks interested in CCSVI) that they can and will do the scans, but there is nothing (yet) after that. He said judge the expense relative to how much you want to pay for peace of mind because the scan cannot do more than that.

I was going to get scanned before Christmas at False Creek and now I just don't know. But...they are doing them, both MRV or ultrasound, and they have informed themself of all aspects of Zamboni's research, so they should be on the right track.

~ Sandra

nicko wrote:I know how everyone feels, I'm classified as RRMS, but I'm starting to have some slow progression between attacks. Which scares the living daylights out of me. Not to mention my balance and feeling in my legs. It feels like i'm walking on squishly ground even if its cement. If i try to stand still I sway like being on a boat in the ocean. I'm pretty sure another couple years and I won't be walking.

MS or not, if we have these vascular problems, they should be fixed should they not? Why do they need to run trials on this... If someone doesn't have ms and they found the same thing in legs or arms etc. They would fix them without issue. Just because we have MS they want to run trials to see how effective the procedure is. Even if they had no effect on MS they should still be fixed.... Them running long trials is just plain wrong in my opinion. Basically they are playing with our lives. The increased risk of stroke alone. I'm sure MSers have a much higher risk of stroke. But because of a pre-existing condition they consider us sickly and don't pay much attention to the numbers.

If MS clinics and dr's really cared. They would be testing us all right now to see if we all really have these defects in our necks and spine. IF most of us do have it, we should be in line to get fixed up.

Like others have said we need to push this issue now. We need to make it heard. We need to make such a fuss that they just fix us so we will shut the h*** up. We can't let this get dragged on and give the drug companies time to shut this up. So they won't lose the billions they suck off of us every year with very in-effective drugs.

Getting politicians involved might help though. As the government here in Canada pays for all our MS drugs, besides Tysabri. One procedure to help us out and the probability of getting off these expensive drugs. Should be a big opportunity to save alot of $$.

I know I know, I rant.... But it feels good ;)

Here, here!! You are speaking my mind! We must have our voices heard, the only way is the net, media and to our doctors! The media especially!

New participant, didn't even know about "This Is MS" until 3 weeks ago, just after CTV aired the CCSVI documentary; and since then I've been following blogs etc with a great deal of interest. I personally do not have the disease but my wife does, 12 yrs since being diagnosed and now in the progressive stage. At 62, she has to permanently use a walker and has all the other wonderful symptoms of MS.
Anyway, we phoned our local MS clinic and their message said, "If you're calling about CCSVI, please go to the MS Society web-site for Info"
Made appointment with family doctor to get his input: he basically says you'll need to wait for the studies to prove / disprove this treatment: he feels the specialization of the MRI / Ultrasound is not in place yet, and that there are dangers in having the angioplasty (?). He's going to make appointment for us with MS Clinic Doctor to discuss this further - he, the family doctor, didn't seem to grasp the Cardio-Vascular vs the Neurosurgeons approach to the disease. Yes, we agree that as yet the theory is still "chicken and Egg" and how do all the other symptoms arise ????? Who knows ????? But I'ver got a feeling that I already know what the MS Specialist is going to tell us !!!! (Oh, by the way we live in BC, and of course UBC is going to set up a "study")
So my input today is somewhat pessimistic, but I don't want to give up on this issue because I want to see some improvement in my wife's demeanor and it seems CCSVI might just do that. I've signed up the on-line petitions (through "ThisIsMS) both Canadian and US, I've written my MP, I've E-Mailed CTV asking them to follow up on their documentary, I've even E-Mailed CBS because it seems they too might be documenting this possible breakthrough.
I agree that something needs to be done to get the medical "industry" to take this issue more seriously, to actually take off their blinders and see the big picture, that if after years of "studies", millions of $'s in research grants and spending, and they still have no answers, then maybe MS is not what they've thought, that maybe it is something a lot simpler with a fairly easy fix.
So, several people have mentioned getting our government in Canada to take note, and my thoughts are "CAN YOU IMAGINE IF STEVEN HARPER AND THE MINISTER OF HEALTH GOT 75,000 (that's the estimated number of MS patients in Canada) LETTERS ON THEIR DESKS, NOT 75,000 SIGNATURES ON A PETITION, BUT A STACK OF 75,000 LETTERS".
Let's do this, everyone, type, handwrite. whatever, but do a letter to your MP with a copy to the Prime Minister and the Canadian Minister of Health. With the exception of your time, it won't cost anything because letters to Parliament are free. Keep the letters clean and intelligent, we just want the Government / Ministry of Health to begin testing every MS patient for the blockages and then to begin the procedures to clean them up. Again, it has been mentioned these procedures could likely save millions of dollars in prescription drug costs covered by the various Provincial Medical Plans, the costs of physical therapy that MS patients need, the cost of disability payouts as patients will likely be able to return to work.
I read Canada has one of the World's highest incidences of MS per capita, wouldn't it be nice if we could become a Country where MS is one of the lowest. Thank you for reading my input.

welshman wrote:New participant, didn't even know about "This Is MS" until 3 weeks ago, just after CTV aired the CCSVI documentary; and since then I've been following blogs etc with a great deal of interest.

welshman,

You and me both. Now I think of my MS in a totally different way. I actually feel better because I have hope. It lifts everything.

If you haven't run across our Facebook blog on CCSVI for UBC MS patients, drop in there and post your call to action and letter writing (google CCSVI and UBC to find it). We just posted the UBC Foundation's info to direct donations specifically for CCSVI research. All good stuff.

What about local health authorities that run the hospitals? I'm thinking they need a letter too because they hold the keys to the technicians who need training in the scanning technologies. If you have any of the names or addresses, I suggets you post them too if you don't see them up there already.

Cheers,

Sandra

I understand the frustration everyone is feeling but don't rush out for testing unless you know for a fact that the lab can do the appropriate testing...Having spoken with a retired radiologist, we need to understand that the technology for the assessing of CCVSI is relatively new and training needs to be done.

When the UBC study and treatment shows some results, (hopefully they won't need to follow patients too long to realise this), there is an ethics requirement to treat the non-treatment group in a trial if the treatment group shows results.

Our best bet is to put the pressure on other groups in the country to also do this study - We should be in touch with our local doctors, universities and MS chapters, and get involved in fund raising for CCVSI study and treatment, as the equipment and training are a necessary and costly expense.

I began to get sick at age 19, bladder, then at 21 difficulty walking and standing. Finally after my right hand clawed up, at 22, and going numb in my torso to the point I couldn't breathe, I ended up in the emergency room where a doctor informed me that I needed a neurological exam, immediately. To make a long story short, my graduation present two months later, after I had finally finished university after four years of study, this mystery illness having hit me half way through, was that I had MS. The neurologist couldn't tell me at first. After a moment of silence I finally said: "It's MS isn't it?' To which he replied: "Yes." After exercersing, I should say trying to rehabilitate myself, at the doctor's suggestion, I broke my ankle. That was seven years ago. And I've been in a wheelchair since, a wheelchair since 26. Since then, I have occasionally lost the vision in my right eye. I have awful hand tremors, I CAN type but forget writing my own name, and eating is a chore, my mother has begun cutting my meat after noticing me struggle when I TRY to do it. Zamboni and the CTV report, have given me renewed HOPE and I suspect many other young people. Up until age 20 I had dreams, ambitions. I wanted to act, I wanted to fall in love, get married, have children. I have been robbed of that. Any medication, from BETASERON, to even BACLOFEN, have failed to do anything for me. One medication, supposed to help with the neuropathic pain, did nothing but a SIDE EFFECT, weakness, made me weaker. GREAT, THANKS MS CLINIC PRESCRIBE A DRUG WITH THAT SIDE EFFECT!! MAKES SENSE....OK?!

I don't want another young person, who wants only to be happy, live a good life, to be able to fulfill their dreams, to go through what I've been through. If someone out there in medical land is saying:"Hey, think we might be looking at this horrible disease via the wrong angle," then let's listen, let's contribute let's participate toward further study with THIS THEORY. That's what this is about. I have lost too much in my brief life and I don't want to continue to lose more.

((((thornyrose)))

Thornyrose76 ... you bring tears to my eyes! ... I read your story & realize as bad as I think I have it sometimes, it pales in comparison. I read stories like yours & see how blessed I am. HOPE is a huge thing ... keep hoping & if we all come together & fight for research with ideas that are outside the box we can only be better for it! I am blessed to be in Canada where it seems they are actually considering Zamboni's approach ... my prayer is that the researchers give thier BEST work & expertise & truely give this theory a chance ... So that your life can be changed & you can realize some of those dreams you have lost or put on a back shelf along your journey! ***HUGS***

Thank you but you could apply my story to so many now, at present and in the future, unless we aggressively follow through with finding what causes this bloody disease and how to treat it. Perhaps we are on the precipice of this, perhaps not, but complacency shouldn't be how we react to CCSVI. Action on all fronts is how we SHOULD react.

Thornyrose,

I know how you feel. Although My MS started when I was 24ish, a little later then yours. I lost my career, was making good money in the banking industry. Lost numerous girlfriends... I don't have enough energy to even consider starting a family at this point and i'm 29.

Ms takes your dreams and fluuushes them down the drain.

I'm not in a wheel chair yet... but its not far off. My fatigue is so bad at this point I can't do anything, especially over the last couple weeks. Looks like the mitoxantrone and copaxone combo is going to be another failure. Mitoxantrone did slow things down for a year or so, but i'm at my max doses now....

Its just so frustrating waiting for the medical community... Especially when we *could* be fixed up right now.

I did not create this petition, but I think it's of utmost importance that we support and sign it...
http://www.gopetition.com/petitions/the ... edure.html

MULTIPLE SCLEROSIS AND THE ZAMBONI PROCEDURE

New research conducted by Dr Zaboni in Italy has shed new light on this nightmare disease, for decades it has been believed that MS is a autoimmune disease but Zamboni has proved that it is actually a vascular disease. Over 500 MS patients have been tested and all have shown deformities in their Jugular veins. No one in the control groups had the deformities.

Doctors in Italy, The US and Poland have carried out procedures on dozens of MS patients, where stents are placed in the Jugular veins to allow the free movement of blood to the brain. Those who have undergone the procedure report miraculous improvement in their condition.

WE WOULD LIKE THE GOVERNMENT TO EXPEDITE THE APPROVAL TO USE THIS TREATMENT. TIME IS OF THE ESSENCE. If you or someone you know has MS please, please sign this petition.

http://www.gopetition.com/petitions/the ... edure.html

Dr Zamboni's name is spelled incorrectly on the petition.