Canadian Collaborative Project on Genetic Susceptibility in Multiple Sclerosis (CCPGSMS)

I've been invited by Dr. Mandat Maharaj, on behalf of the Dalhousie Multiple Sclerosis Research Unit, to participate in a research study on the above title. Apparently I have been "assessed as being eligible" for the study and it is inclusive of 15 clinics nation wide. The idea behind the study is to "ascertain more clearly the specific genes involved in MS, as well as any environmental factors which may play a role." I guess in order to find a cure we have to find a cause. I don't see why I wouldn't participate. It's my future we're talking about here.

Now maybe it's just bias, as I have a vested interest, but it seems to me that scientists who study the mating habits of endangered fruit flies of the Amazon are a waste of a scientific brain. This venture seems to me totally worth while. And while they may ask for multiple blood samples and god knows what else, I just can't say no to good research that may help me and people like me. As Canada has one of the highest rates of MS in the world, if not the highest, we should naturally be one of the leaders in the fight for a cure. At least that's how I see it.

So now I just have to wait for this Alberta Schaap or Cindy McCarron to call me. I hope they do soon because in two days I'll be living in Montreal. :)

So I guess the next step is to find out who my fathers real family is so I can give them all the required information. I never thought I'd have to do that. And I have to, because it's good research, and I don't mind tearing though a few layers of emotional pain and discomfort to find a cure one day. If my suffering will prevent someone's pain in the future then so be it, eh? This is essentially it: my (birth) father is an asshole--he was adopted--don't know him, or his real family, know that one of his blood brothers lives in North Sydney, and another lives in Donkin. That's the best place to start. oooo... I feel like a detective... Just like law & order. hehehe. The difficult part is that I'm going to have to do all of this from Montreal--in my spare time, which is going to be almost nil.

And that's that, I guess.

More Updates

Back on the rebif tonight. Have to get the following tests done before I leave in a week.

-25 hidroxy vitamin D
-Cholesterol & Triglycerides profile (which requires a 12 hour fast)

Yay. Lucky me. :)

All the news.

Report

Big day today. A lot happend. The morning was another up too early thanks to me going to bed too late last night and forgetting to put my keys on the key rack which promts my up too early for work dad to wake me way to early to look for them. I wish I'd just remember to do that when I'm out late.

So I had an appointment with a "new" neurologist today; well he was the one that seen me the first time, 5 years ago, and couldn't find anything wrong with me. It was just my one year checkup to see how far my MS is progressing. The news is all good. My eyesight with my glasses on is 20/20 in my right eye, 20/25 in my left 'blind' eye which has about 80-85% of its vision back. All my reflexes were good, my gait is good, minimal problems with bladder and bowel, spasticity is 'ok' and there were only a few problems with my left side which is a little sluggish to respond to commands. All and all a successful visit.

As it turns out, Dr. Maharaj is also an actor/director and did a lot of work in the Carabien, so we had some good conversation about theatre during the check up. Interesting man, and I didn't hold it against when he couldn't find anything wrong with me because he threw the book at me as far as check lists go: I'm getting my cholestoral checked and my vitaman D level, I still can't remember why. And I got a prescription for Vitamen D supplaments. Merm... whatever. I'll take 'em I guess. He said to take them with tums. I guess they are hard on the tummy.

When I got to Judo tonight I was feeling pretty good and I over did it, just a bit. Yeah. Tonight was the closest I've come to throwing up from a work out in my life. I'm gonna be sore in the morning. But I've been feeling so down about not being able to run 5 miles anymore, I just want to know I can still be in shape and still fight my best if I so choose. I guess I'll have to suffer through some painful workouts until my body can handle it.

I'm leaving in 12 days for Montreal. I still have to get a referral to a GP up there so I can get in touch with a neuro doc and a clinic--of which Montreal has some of the best in Canada--and then sent the info to here so they can send my files up to Montreal. Nothing like supplanting my entire medical team in only a couple weeks. Yay. lol

It was funny giving my medical history to Maharaj. He asked about my first attack. I told him all about it. Then he asked if I had seen a neurologist. I said Yes. He said here? I said yes. He said who did you see? I said -- YOU. hahaha. He said... w.w wah.. I didn't find anything?
nope?
Did I send you for an MRI
no
we didn't have one here then
no
so you would have had to go to Halifax for that then
yup
oh, so don't be too hard on me about not finding anything then
*I laugh--politely*

And that's pretty much how that went. I always get so nervious when I go to those and they are examining you and talking to the nuse telling her what they want done in forign medical language that sounds like military talk. I get the shakes when anyone looks into my eyes with lights like that and he spent a lot of time there, like he found something wrong. It always freaks me out. But he liked what he saw and I was out of there in 30 min. Met a real nice lady in the waiting area too. She told me she had an optic neuritis in both her eyes and was partially crippled with her right leg and could hardly walk--a scary glimpse into the future. I felt so bad for her--such a rare thing to have both eyes out. And she seemed really worried about it not coming back. God, what a shit disease. I can still do Judo though (Brown belt--oh yeah) and I'm going to acting school. Life ain't over yet, man. Life ain't over.

murm

I guess I'm ok. My mind is squrming a bit, my eyes feel like they are dancing and my breath feels short. Of course, everything is fine--my pulse is good, my lungs are ok.. in fact the only thing out of order seems to be I'm not getting enough sleep. I blame all my discomfort on that.

I'm almost out of rebif. I didn't do anything about getting any more yet. I assume my clinic on the 14th will yeild a new perscription. If so, I'm only going to miss one or two doses on the sunday before it and maybe the tuesday possibly the thursday. Missing a week won't kill me so I'll just bring it up at my appointment that my perscription is up.

I also have to find out what I'm doing to psyc council in Montreal. My appt. for that isn't until the 26th (I'm leaving on the 28th--nothing like cutting it close).

I'm hoping to get out tonight, when the energy comes up, to get around for a long walk. I tried running the other day and haven't felt good since then. So I think I'll stick with my walking despite my longing for a good run. Sometimes I can do it.. other times.. meh... C'est le vie.

Pray for sleep and a quite mind. Those are the only things escaping me at the moment. Need that energy. Good, clean, positive energy. Been a while since I had that. :)