Seeking opinions on Calgary MS program and/or Brigham & Women's hospital in Boston

[doublevision1]

This is regarding my previous post about the more aggressive route my neuro may want to take (Novantrone), should he take me off Rebif permanently.

I've been considering the alternatives (Copaxone, Tysabri, etc), AND, Ess's suggestion of getting a second opinion.  I had the thought that, if I'm going to pursue another opinion, I think I ought to stick with MS specialists.  I have dealt with a couple of other good neuros I could contact, but neither deals exclusively with MS.  Since there is only one MS clinic in Edmonton, perhaps I should go farther afield.  Calgary is not too far for me (7 hour drive) and I could make a mini-vacation of it.

My other thought is that since I may be in Boston in August, maybe I should try to see someone at Brigham hospital. Unfortunately, Canada's universal health care stops at the Canada/US border (unless the treatment is not available here), so it will be out of my pocket.  But I don't mind paying for a consultation if it gives me some peace of mind.  I have emailed the hospital regarding info on fees for out-of-country patients.  Dr. Howard Weiner runs their MS program; I think he still has a clinical practice but I'm guessing it may be a long wait to see someone as busy as him.  But there are several other specialists at that clinic.  I wouldn't go out of my way to travel that long of a distance for an appt, but since I'm probably going to be there anyway for vacation, thought it might be worth a shot.

If anyone has any personal experience at either of these facilities, or has heard anything, good or bad, I'd love to hear about it.

Thanks!

db

[Rena705]

Well that should be very interesting and I am very anxious to hear what they have to say!  It will also give us an idea of what the medical services are like in US for comparison.  I hope that you get all the information that you are looking for honey and I look forward to hearing your report!

Rena

[essdipity]

I'm so glad to hear this! Best of luck. I hope they'll give you a written report as well.

ess

[doublevision1]

UPDATE:  I finally got an appt at the end of July at Brigham Hospital at Harvard U. in Boston.  I am very pleased!  The timing fits perfectly with my summer plans.  It was a long time hearing back from them, so I was working on getting a referral to St. Michael's in Toronto as a back up, but won't pursue that now.  

The purpose is to get a second opinion on a treatment plan for my early but very active RRMS.  Things are so up in the air right now, experimenting with Rebif to see if I can tolerate it long term; and if not, a lot of uncertainty as to whether I should try Copaxone, Novantrone or Tysabri.  I am hopeful I will get a thorough review in Boston and some good advice as to my best course of action.

Anything valuable that I learn from my visit, I will be sure to share with you all.


db

[doublevision1]

Darn it!  I guess no one has any info on these places?

Bumping up....just in case.

[doublevision1]

Yes I did check out their website and it pretty extensive.  I'm going to spend some time reviewing it later today.  Probably the best site of a hospital facility (for MS info) that I've seen.

Hopefully there is someone here who has some firsthand knowledge!

db

[sllowe]

Hey Db,

I'd be curious to see who had thoughts too.  Have you checked out their website? There is a lot on there.

Haven't seen anyone here who's been, but maybe we've never asked.

Hope someone has some thoughts,
-SL