Calling all Canadians

[mtstan]

Hi Cherrymom,
I haven't been here for a while but came back on here tonight. I am also in BC and a Mom I hope everything goes ok for you with your appt. My neuro is at the MS Clinic at UBC and they are awesome there. Let us know it all goes.
Take care

[StarraStarra]

Hey now

I'm Lori. I have issues. I was diagnosed 95 days ago. I'm 34. I'm married; no kids, pets or houseplants. I live in The People's Republic of East Van, British Columbia.

I have only had MS symptoms for 9 months, and I have RRMS with residual deficits.

I don't know how I'm dealing with this exactly, but some days are worse than others.

I've had two mitoxantrone treatments, I go for my third on April 9. I'm better than I was in January, but I'm not even close to where I was a year ago. If I can't get back to that level of ability, I will have to seriously reconsider everything about my life.

Yesterday I vacuumed for the first time since December. If you knew about my obsession with Flylady routines, you would know that doing that was a minor triumph.

[Cherrymom]

MS clinic in June

Well I've decided to wait and go the MS clinic in June - the other Neurologist would be starting over anyway and at least this is starting with people who might be able to get answers.

I had a bad fall yesterday and sprained my ankle (my leg gave out) I got all the paperwork for UBC and it was a bit overwhelming. I guess you just keep pressing forward.

[prairiegirl]

If it makes you feel any better, Burnaby is really good. I was just there this morning in the nuclear medicine depatment and they were very kind to me. Most people going there for MUGA scans have cancer, so they were very gentle in asking me what kind of cancer I had. *laughs* they were some surprised when I told them the chemo I was going to get is for MS. They said I was their first MS MUGA patient. go figure!

Anyway, I am happy with the standard of care I have at BBY and I hope you will be too. Do you know who you will be seeing yet?

[Hopper]

Hi fellow Canadians and Maritimers

Hi its so good to have found more Canadians.I was dx dec 2007 after a 31/2 months of laying in the hospital. I am looking for others to chat with that have this crazy life like mine.

[prairiegirl]

I'm Lori. I have issues. I was diagnosed 95 days ago. I'm 34. I'm married; no kids, pets or houseplants. I live in The People's Republic of East Van, British Columbia.

I have only had MS symptoms for 9 months, and I have RRMS with residual deficits.

I don't know how I'm dealing with this exactly, but some days are worse than others.

I've had two mitoxantrone treatments, I go for my third on April 9. I'm better than I was in January, but I'm not even close to where I was a year ago. If I can't get back to that level of ability, I will have to seriously reconsider everything about my life.

Yesterday I vacuumed for the first time since December. If you knew about my obsession with Flylady routines, you would know that doing that was a minor triumph.

Hey just to let you know, there is an under 40's MS group that meets 1x month at the MS offices in BBY. (On the Skytrain route-Metrotown.) If you are interested, call the MS office and they will hook you up. It's a nice group of women and we are all about the same place-about 1 year give or take since diagnosis.

I am just doing the pre-chemo workup (had my muga yesterday) and will be doing the same med as you. How are you doing? Anything I should know? I will be having my treatments at BBY general, probably about mid-April, as I have a trip planned shortly.

I know what you mean about re-evaluating your life. I've had to do a bit of that myself.

Anyway, waving to you from the 'burbs.

[prairiegirl]

Hi its so good to have found more Canadians.I was dx dec 2007 after a 31/2 months of laying in the hospital. I am looking for others to chat with that have this crazy life like mine.

Welcome Hopper! *waves from the west coast*
That doesn't sound like it was very pleasant. I hope you are doing better now!

[three4meandyou]

sativex

does anyone here use sativex i have tried everything for my nerve pain. My worst nerve pain is in my head on my right side same exact spots as my two large lesions that left a crater in my brain. Does sativex help and if so can I get it from canada? Please help any suggestions are appreciated
thanks
melissa

[nepcan]

Hi from Canada

I'm 48 with RR turned into SP but my EDSS scale went from 6.5 in 2000 to 2.5 2005. Healthy living contibuted to the improvement.

I live in Ottawa, Ontario Canada

[Hopper]

Hey

Welcome Hopper! *waves from the west coast*
That doesn't sound like it was very pleasant. I hope you are doing better now!

Prairegirl it was but I am sure others have their stories too, I am 38 and I am trying to fiqure what I am to do and go next.

[Cherrymom]

Prairiegirl - I'm actually going to UBC MS clinic. I will get the full assessment - Neurologist, Eye doctor, Nurse, Genetic. I don't know how it will differ from what I've already done (it feels like we've already tested everything). But the Neurosurgeon said that he feels this is the source of my problems so "we'll see" I was sort of hoping for a different response - like another idea of what could be making me be like this.... no such luck.

[prairiegirl]

Prairiegirl - I'm actually going to UBC MS clinic. I will get the full assessment - Neurologist, Eye doctor, Nurse, Genetic. I don't know how it will differ from what I've already done (it feels like we've already tested everything). But the Neurosurgeon said that he feels this is the source of my problems so "we'll see" I was sort of hoping for a different response - like another idea of what could be making me be like this.... no such luck.

THe not knowing is hard. At the very least, someone is listening enough to want to try and figure it out. That part sometimes requires alot of patience. I hope you will get answers soon.

[prairiegirl]

Prairegirl it was but I am sure others have their stories too, I am 38 and I am trying to fiqure what I am to do and go next.

I just tuned 38 on Sunday (22nd). Yeah what to do next is the big question. I just stepped back from working outside my house (self employed) but want to keep my hand in, which I can do my computer. I had to do this because my pain specialist said I needed to lower my stress level. I am still adjusting to not being as busy as I was. I am also getting ready to start chemo, so it's probably a good thing that I am not working like I was. I need to look after myself if I am going to have any chance of this treatment benefitting me.

What's it been like for you?

[274500]

does anyone here use sativex i have tried everything for my nerve pain. My worst nerve pain is in my head on my right side same exact spots as my two large lesions that left a crater in my brain. Does sativex help and if so can I get it from canada? Please help any suggestions are appreciated
thanks
melissa

Just a hint. Google the word "dirucotide". Help may be on the way. For your nerve pain, have you tried Lyrica? It sure has helped me.

274500
Tom

[kathrina]

NERVE PAIN

I have been taking neurontin for the nerve pain, for the last few years. I take 300mg four times a day,and also baclofen 20mg four times a day for spasms. both this have really helped, hardly any spasms or nerve pain now. best of luck!