I knew I was sick, and was fairly certain it was MS, but I wanted it to be something "fixable" - something that I could get medication or surgery for and it would be gone. I wanted that more than anything even though I knew deep down that it wasn't fixable. I wouldn't even speak the words or share what I suspected because I wanted it to be something fixable.
If it weren't for Joe, Mum, Dad, Joe's parents and Nicole I would not have made it through my diagnosis, sickness and recovery. My friends have been extremely loving and patient this year and I cannot believe how a misanthrope like me has ended up with such amazing people in her life.
I am a lot better today, probably even better than I was 18 months ago. I get dizzy pretty easy, I lose my balance for no apparent reason, I get weird stabby/shooting pain in my shoulders and biceps, and my hips/upper thighs are bruised from running into the corners of furniture and fixtures, but that's pretty much it.
No fatigue.
No heat sensitivity.
No nerve fatigue on short walks, or when I stand for a long time. I can even get through a medium length walk without foot drop.
This year has been hell on wheels, but thanks to mitoxantrone, yoga and physiotherapy techniques, Wellbutrin and opting more often for healthy food options, I'm feeling pretty good.
This might just be the anti-depressants talking, but I'm feeling pretty positive about 2010.
Thursday is my 1 year check up/follow up after mitoxantrone treatment #5, so we'll see if my brains are still there, we'll see if my body is actually moving as well as I think it is and we'll talk about Copaxone or whatever until they find a cure.
A cure is my only hope, because I know with certainty that this "pretty good" isn't going to last. I don't know how long I've got before it all goes to shit, but that is the truth. It *is* going to go all to shit. That's MS. That's what makes me crazy.
Donate now to the MS Society of Canada
Donate now to the National MS Society
Donate now to the MS Society
End MS
http://feministwithoutclothes.blogspot.com/2009/12/lori.html
ReplyDeleteWhat about that study going on in Buffalo? Can you get into that?
ReplyDeleteYou have to be able to travel to and from Buffalo, NY on your own dime, just for a diagnostic study. Not worth the airfare when no treatment is available.
ReplyDeleteThat's why I'm not even going to bother with the SUNY study.
They aren't actually doing the surgery? That's bloody ridiculous. Didn't I hear that a guy at McGill is also doing it? I assume he's also only doing the diagnostic?
ReplyDeleteAs far as I know no one in Canada is doing the surgery and only one site in the US is doing it... for $50,000-ish after all the bills are in, but he's using stents and I'm not sold on the safety of using stents on veins when they were designed to be used on arteries.
ReplyDeleteThe other choices are the UK, Poland or France. I've been told that the surgery in Poland only costs $5000 USDs.
Because there has been no clinical study to see if the underlying reason to get the treatment is found in everyone with MS or not, they have to study that first. That's what they're doing in Buffalo, and there's a doctor at McMaster/Wayne State who's doing a similar thing by using MRIs.
I can't even get a doppler scan of my neck without paying cash for it, because there's no recognized medical reason for someone with MS to get one at this point.
There's definitely a Canadian clinic doing the scan as part of a study. The guy was on TV talking about it. I'm 95% certain he's at McGill. I remember because I made a mental note to ask Heather Durham a neurologis (and one of our board members) if she could give me any more information on it.
ReplyDeleteSorry - my bad. It's a Canadian researcher at McMaster...
ReplyDeletehttp://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091120/W5_liberation_091121/20091121?s_name=W5
Dr. Mark Haacke.
I believe he's only doing scans right now... and it's Hamilton (which isn't exactly close), but might be a way for you to get scanned if you have another reason to be out here too.
The guy at McMaster is doing it by reading MRIs not doppler neck scans. Unfortunately, the MRI I just had was not done in the right way for his purposes so I'd have to pay $600 to get it done privately in order to get in his study.
ReplyDeleteThe MS Society of Canada is making funds available for CCSVI research being done in Canada. The clinic I go to here is a leading MS research facility and I'm pretty certain that there will be a UBC research proposal out before the January cut off date.
We'll see what happens a little bit closer to home in the new year.
I'm not so desperate right now that I can't wait a few more months to see if this theory has both teeth and legs.