MS: Brenda Requier on receiving CCSVI treatment - facebook prikbord

Bio: Edmonton-area resident Brenda Requier, in her early 50s, has

multiple sclerosis. She travelled to Poland in June to undergo

vein-opening procedure based on the unproven theory that MS is linked to

chronic cerebrospinal venous insufficiency

(CCSVI). She says there's been a great improvement in her MS symptoms

following the operation. She shared her experience with CBCNews.ca Your

Voice and discussed why she thinks the treatment should be available in

Canada.

My story: I found out about 16 years ago [I had MS], but I've had symptoms since I was a teenager. I had extreme
fatigue, and I was starting to have more and more mobility issues over

the years. Over the last few months, before I went for treatment, I had

gone deaf in one ear and partially deaf in the other. My vision was

continuing to get worse, there was a lot of neuropathic pain, and

there's something called the "MS hug" -- it's a tight banding around the

ribs that sometimes makes it almost impossible to sit up for very long.

There's such a myriad of symptoms that it's hard to pinpoint. I kept a

diary of my symptoms before and after [the operation], partially so I

could look back and see any improvements I'd made. I was having a lot of

memory issues. I couldn't even make up my mind what I wanted to wear in

the morning.

Now, I'm having no problem. I just get up and I make plans for travel and do things I need to do. I'm now babysitting my
one, four, and six-year-old grandsons most days until two in the

afternoon. I never would have been able to do that a year ago, never. It

was really difficult to have company or to plan to go out, because I'd

never know, moment-to- moment, how I'd be feeling or how long I'd last.

I'd never last that long -- even having a conversation took a lot of

effort. Now I can have company, I can go out.

We have a thing close to our neighborhood called Kites Over Callingwood, and I actually
flew a kite with my grandson when I came back from Poland. I've done

things I haven't done for a long time. I actually even let go of my

handicap parking placard when it expired in August -- I didn't feel in

good conscience I could keep it right now.

It's sometimes difficult for what we call the "normal people" to empathize and
understand. When we say "fatigue" it's not the same thing as "tired" --

fatigue is all- encompassing, it's head-swimming .... I used to have

such severe vertigo that if I rolled over in bed, it was like the earth

tipped over on its axis. I don't get that anymore. There are still

little ups and downs, little backflips when you're overstressed and

overtired, and I didn't have the instant results that some people did

... but I've been grateful for every [improvement].

It's just heartbreaking to me that people have had to go into debt and fundraise
to get help and when you feel that your quality of life is so little.

Some people are looking at going into hospice and passing away. Why are

they denied here? They are fundraising and going overseas and then to

come home and not have health-care and followup?

This is not a new procedure, this is something's been done for a while. The only thing
that's new is that there's a connection between MS and CCSVI. Right

now, what we're saying as a group is that all we know is that we have

symptoms of CCSVI and [the procedure] is helping. They can figure the

[scientific] connection out later -- we just want to have some relief

and quality of life, and some people actually want life.

Look at the story of Barb Farrell, who went to the Ontario government to beg on compassionate grounds for
treatment -- her husband begged on her behalf -- and she was denied. A

guardian angel swept in and paid to have her [flown] to New York for

treatment. She was going into hospice care on a feeding tube and

breathing-assist, and now she's home with her family. In this country,

have compassion and common sense just gone away? We patch drunk drivers

back together. I would never leave somebody freezing to death on the

side of the road. You don't turn your back on your people. There has to

be compassion.

As for those few who say Canada needs to take responsibility for their health-care, and it's our fault, and taxpayers
this and that -- we're taxpayers too. So are our families and so are our

friends, and we've had overwhelming support from people we've talked

to. I think the government needs to intervene federally, so that it

stops going from the federal saying it's a provincial issue and the

provincial saying it's College of Physicians and Surgeons issue, and

around and around.

None of us is saying that this a cure for MS. We're all saying it's a treatment for symptoms. We really would like
almost to have MS out of the equation for the time being .... We're

being discriminated against for treatment, because we have the label MS.

If I had a jugular vein clot from dialysis or from a motorcycle

accident or whatever, I would get treatment. But because I'm labeled as

MS, I'm untouchable, and that's discrimination."

http://www.cbc.ca/news/citizenbytes/2010/11/ms-brenda-requier-on-receiving-ccsvi-treatment.html