Boston MS Centers

[JaneK1975]

Hey folks. I will be spending a couple of years in Boston for grad school, and I'm thinking about hooking up with an MS research center while I'm there to try to access services like cognitive testing, classes, treatment for fatigue, cognitive therapy, etc., etc., etc. (maybe If I'm lucky I can even bring in a little extra dough through participating in a paid clinical trial?)

From the National MS Society website, I have found the following centers in Boston:

1. MS Center at Caritas, St. Elizabeth's Medical Center
2. Partners Multiple Sclerosis Center, at Brigham & Women's Hospital

Does anyone have any experience with these or any other MS Center in Boston that they could share? Any feedback or advice on where to look would be greatly appreciated. In case you are wondering, I'm newly diagnosed with RRMS.. I hope everyone has a great weekend planned :)

Best,
Jane

[doublevision1]

Hey Jane,

I visited Partners at B&W/Harvard for a second opinion back in 2008.  I've gotta hit the sack but I'll follow up tomorrow.

BTW, what are you doing your Master's in?  

I'm jealous you get to live in Boston.....what a great city!  Then again, I'm also jealous that you currently live in So. Cal.  You live in very nice places.  :-)

[michelleric]

Hi Jane,

I lived in Boston for 11 years, as most of our family is there.  DH born and raised there, actually is there now.

Anyway, at one point we were going to move back.  I looked into ms docs, spoke with the docs I used to work with, friends etc...

Was told the best place to go was the Brigham.

So, not from personal experience, but word of mouth. Hope this helps.

Michelle

[kwarendorf]

If size matters, Brigham & Women's, Mass General and Harvard Med School are all affiliated. That seems like a pretty good brain trust to access. That Partners MS Center looks like it might almost be an MS Day Spa!

Have you gotten any doctor's names? I think that's the most important thing.

Kyle

[JaneK1975]

Thanks, you guys. I appreciate your input. Michelle: the word of mouth input is very valuable.

Doublevision: I'm going for a master's in speech-language pathology. My school is part of the Partners system, and as a student we have access to the same perks that employees of the Partners system have, so maybe that will help me gain access to the B&W MS Center. I would love to hear more about your experiences at B&W  when you have some free time.

Kyle, that's a good point about doctor's names. I will try to find out about some of the doctors at B&W. If anyone has any experience with any of the doctors, feel free to PM me.

I hope everyone has a great week :D

[kwarendorf]

I'm going to be talking to my guy on Saturday. I'll ask him about names in Boston.

[doublevision1]

I saw Dr. James Stankiewicz at B&G in 20008 in order to seek a second opinion when my regular neuro was recommending I consider trying Novantrone. My first year following dx was rough: severe relapses each with significant residual damage.  At the time my neuro considered my MS to be quite aggressive so early in my disease course.  Dr. Stankiewicz was quite frank about his concerns regarding Novantone and recommended Tysabri instead, if things didn't settle down with Copaxone.  Turns out things did settle down so as yet I haven't been faced with that decision.

I liked Dr. Stankiewicz; he seemed very knowledgable and was quite personable, though generally I care a lot less about bedside manner and more about technical expertise and good judgment.  Still, it's nice when you can get both in the same doc.  I think he's worth a try.

Dr. Howard Weiner heads up that clinic and is pretty renowned in the field.  His book "Curing MS" is interesting and I think povides a lot of insight into the type of clinician he is.  He still maintains a practice, though it might be tough to get an appt.

Dr. Rintell, the staff psychologist, has done a lot of work on the cognitive effects of MS and has published some interesting works.

I considered participating in a three year study there that involved the predictive value of MRI for determining disease course.  I don't recall all the details or the researcher's name, it was none of the above.  In then end I couldn't commit to returning to Boston three years in a row given I live over 3000 kms away.  Sounded interesting though, and patients were to be given copies of their reports and CDs of images if they wanted them.  I don't believe there was compensation for participating.  I no longer see anything about it on their website so the study may have concluded.

Another member here also saw Dr. Stankiewicz and was happy with him.  I'll bump up my old threads on my visit as well as hers if you're interested in more details.

LOL Kyle, nope B&G is no day spa!  I was quite curious about what it would be like compared to the MS clinic where I go at U of A in Edmonton.  As far as the office itself, pretty basic and clinical as you'd expect.  I believe they do have some pretty advanced MRI technology on site so it would be great I think to have access to that.

[Lulu54]

I have heard really good things about the MS center at Brigham's Womens Center.  Unfortunately there is no money to be made in doing clinical trials, BUT if you do one with your therapy, they will cover all of your drug costs as well as the medical appointments related to the treatment.  That is always a good budget stretcher.

Boston is also home to my fav research group - the accelerated cure project.  ACP is I believe the largest repository of MS samples in the world, used by researchers.  I am in the registry, along with two of my sisters as controls - we all did extensive medical surveys and donated tons of blood.  Ok, not tons but large volumes.  They are a wonderful group, so please check into them once you get settled in Boston.

[doublevision1]

Good point about AC, Lu.  I'm in the registry as well, though I enrolled at the NYC site.  Great organization and one we should probably talk more about here.  As you know they have a number of enrollment sites in the US, and the more who enroll, the more accelerated the research.  And yes they do take a large volume of blood!  I was poked many many times before they could get it flowing as I was dehydrated from traveling.  Fortunately they got it on what the nurse said would be her last try.  I was glad as I'd just spent hours doing the interview/questionnaire and would have regretted if was all for nothing.  Check them out, Jane.  They also put on some very fun sounding fundraising events in the Boston area, and probably elsewhere as well.

[Jacksmom516]

LULU I am enrolled in the repository as well and you are right about the blood thing I believe it was 17 vials of blood - but if it helps they are welcome to it,  I enrolled at the Johns Hopkins site.