Hello from Ontario, Canada

[Pistachio]

Hi there! While I'm pleased to make your acquaintance forgive me if I don't feel overjoyed at having done so through an MS forum. Let's face it, none us wants our points of assimilation being a disease. But, alas here I am and there you are so, "Hello!" .

I'm a 48 year old female. I had ON in 2013. I refused an MRI at the time and chalked it up to stress. I've had odd incidents here and there since but nothing huge. Then 2020 came. As if 2020 weren't history book worthy enough, my body started to seriously fight against me. I have tremors, heavy legs and arms and my memory started failing me. I waited 88 days for an MRI (thanks, Ontario sick-care system ). It's back and, yep, there are lesions. I see the doc on Wednesday to be referred out to neuro. Lovely, this is exactly how I pictured my later years. Well, it is what it is.

That's my story. It's not my legacy because, dammit, I won't let MS be my legacy, but it's my story. Thanks for reading!

[Seasha]

Welcome to MSWorld, Pistachio!

We're glad you found us. I think none of us are overjoyed to have this diagnose, but here on this wonderfully supported forum, we get it and can help you on your journey.

Good luck with your Dr appt. and when you eventually get to see your neuro, come back to let us know. We, collectively, have great suggestions on questions and tips for a conversation with the neuro.

p.s. I love your username

[pennstater]

Welcome Pistachio.

Glad you found us. I was 44 at diagnosis and blind-sided by it. I can definitely relate to a few odd things looking back. This was one of the first places I came. There are many supportive and knowledgeable people around. I do hope you come back and keep us in the loop with your next steps.

[KoKo]

Hello Pistachio

Nice to meet you!

Keep posting, and let us know how you're doing.

Take Care

[Mamabug]

Welcome Pistachio. Yeah; it is what it is.

I'm a dual citizen. Born and raised in Saskatoon, SK. Married a US citizen in 1984 and have spent my adult life in Kansas. I also have a daughter that reversed my footsteps; grew up in Kansas and married a Canadian. She lives in Manitoba. I still get back to Canada regularly to see family; although not as regularly during COVID of course.

[palmtree]

Hello from the US. I’m not too far from the border of Canada.

I remember how much I didn’t want to be here when I first got diagnosed, I would hear people’s stories and think that I would never belong to their club. Ten years later I’m still here. No cure.

it worries me that you might not be getting all the medical care you need. Many people from Canada have written on this site about the way people with MS are cared for. A man went six years in a wheelchair before he could get an MRI.
when I got diagnosed it was immediate. I went in with a weak leg, the neurologist ordered an MRI and it was obviously MS. I was put on treatment right away. But that treatment didn’t work so I got ON and spent five days in hospital On steroids where I was pampered like you can’t believe. As soon as the steroids wore off I had a massive flare. There were three giant new cadmium enhanced lesions and an explosion of little ones. My neurologist spent an entire day On the phone battling to get me approved for Tysabri. Went back to the hospital and she was there every morning at 6:00/am to do her rounds, I started Tysabri right away.and I had constant doctors appointments.

Then, I got an infection in my jawbone; probably because of the steroids and Tysabri. Spent 3 weeks in the hospital. The hospital had huge rooms with marble sinks with giant mirrors, a lounge for family and fancy showers. I didn’t want to leave it was so luxurious. I had Medicare pre ACA. I felt guilty sucking up so much of the healthcare resources while others were going without.

In the US, we are at a crossroads. No one really knows the answer for healthcare. There doesn’t seem to be enough to go around with all the expensive advancing technology and outrageously expensive drugs. Your system is struggling and here there are people without any care.

Since you have experienced the disadvantages of a socialized healthcare system, what do you think the US should do?

[Boudreaux]

Hello from the Dirty South. Pleased to meet you.

[Pistachio]

Since you have experienced the disadvantages of a socialized healthcare system, what do you think the US should do?

I used to live in Dallas, Texas. I was in Human Resources, specifically benefits administration. I know a lot about American health care. Having lived on both sides of the border I can say there are pluses and minuses to each system. But, having experienced both I would choose for-pay health care any day. Countries who do not have universal health care don't often get the opportunity to see the down side of our system. Many, MANY people die, or progress in their disease state while waiting for tests, imaging and surgeries. My Father-in-law lost his arm because our system took too long to have him tended to. Strangely enough, he was visiting us in Dallas when he ended up having his arm amputated. If the same situation had happened in Ontario he would have died. He never needed to get to the point of losing his arm. Our health care system is responsible for that.

But, anyway, I don't want to get into a political post. That never turns out well.

[KoKo]

But, anyway, I don't want to get into a political post. That never turns out well.

Agree, and thank you Pistachio.

[sarabeach123]

Sorry to hear you've been having trouble navigating the health system. I'm in Canada too, although not in Ontario. Long wait times are frustrating, but there are some things you can do to get faster service. It is comforting to know that regardless of your life circumstances, you will always have access to health care. I have always been a strong supporter of our health care system, so I felt guilty about it, but I did get an MRI through a private clinic to avoid the wait time for my initial MRI. Most provinces have some private services you can pay for, but they are generally quite expensive. I was feeling a fair amount of anxiety about the situation once I did get the MRI results, and I was going to have to wait several months for a MS neuro appointment, but fortunate my GP was able to call and get me in sooner. Ask your GP to advocate for you. You will also need to advocate for yourself.

If you choose to go on medication, early intervention is recommended. I've heard that the Trillium Drug program is very good in Ontario and similar to the one we have in NS. I have drug coverage through my insurance from my workplace, but they only cover 80% of the cost. I'm not exactly sure how the remaining 20% is paid! It's some kind of combination of the Biogen One support program and the provincial government drug program. It's automatically set up through your neurologist. There are people assigned to your case and you will have to do very little paperwork except the initial signing off on it. I think the drug company itself will also cover part of the cost if you can't pay the full amount through other sources. I was told when I went on Tysabri that I would never have to worry about not being able to pay for the medication, even if I lost my job. There are also bridging programs available while the "team" is working on getting your paperwork approved, so I got my first infusion quite quickly. I don't even know how that worked! Maybe it was just a freebee from the drug company.