Finding a decent MS Specialist

[dannig]

I know you can't post doctors names or any identifying infobut I was wondering if anyone could send me a PM w/ any recommendations.  I posted a while ago about my specific situation but to make a long story short I like my general neuro (who hasn't dx me but wants me to possibly start meds)  so I'd like a @nd opinion froma MS spec.  I went to one in Philadelphia PA and he never actually looked at me he told me I don't have MS (which is what I want to hear)  but I just don't feel like he made his decision of all the facts he looked at all my diagnostic test results but not me and his resident did a half-a**ed exam.  Alot of my physical abnormalities are objective not subjective so someone should have assessed me thoroughly.
I live in southern NJ-I am willing to travel to see a good doc!!!!
Thanks to anyone who answers w/ info
Danni

[dannig]

Thankyou to everyone for their info and opinions.  How do you know when the doc is truly a world renowned doc or a leader in MS research or the clinic itself is so reputable or better then others.  I went to the Thomas Jefferson University MS center-saw a MS specialist and felt like I could have had the same exam @ a drive through window.  I always google the docs and clinics and try to learn as much info about them as I can.  You can always find wonderful claims about these docs and clinics on the info (as well as bad info) but how do you really know when it's true.  Sorry I always feel like I'm being so negative about every thing but all this always seems so frustrating.  At least I have a group of friends that listen and UNDERSTAND too!
Thanks,
Danni

[jewski]

It may be a bit of a drive for you, but I got my 2nd opinion at Cleveland Clinic, and they were great.  

My apt was with a "fellow" in the ms speciality fellowship program at CC.  He did a very thorough exam and reviewed all my films, reports, history, etc.  Then he left and consulted with the Director of the MS clinic who cam back in with the fellow and went over everything with us (hubby and I).  Both of the Dr.s gave us excellent information and lots of time.  Neither acted like they were in any hurry and were very relaxed and answered all our questions.  Gave good recommendations on treatment options - both conventional and drug trials.  

I also was able to get into them quicker than I was able to get into the one and only "MS specialist" here in northern indiana!  Which was very nice and quite a surprise.

Good luck, I know it made me feel better - even though the news wasn't any better - to have the second opinion from someone who really is a specialist.

[sllowe]

Yes, Johns Hopkins is in Baltimore, MD.

You can find their website on a google search.  Go to the Neurolgy Dept., and you can look around at the various Docs.  If you do decide to go there though, you send them all of your paperwork in advance.  It then gets looked at by a team of nurses I believe who direct it forward and a Doc gets picked for you.  I tried to get in w/the top guy there, but didn't.  

The Doc I had was good though.  My buddy Andy, who just joined the forum went to Mt. Sinai for his 2nd opinion.  Maybe he'd be willing to share his experience there.  He's new though and still finding his way around the website. . .

hang in there, and absolutely forget about your 2nd appt/opinion.  Sounds like it was worthless.  We'll call this next one your 2nd - okay?

be well,
SL

[doublevision1]

Oh, frustrating!  I just typed up a reply and it didn't work.  I'll try this again....

To answer your question, I learned about the MS clinic at Brigham from reading the work of its Director, Dr. Howard Weiner.  I have his book, "Curing MS," and have come across a number of articles by him.  He is considered a leader in MS research.  Although I dropped his name when I requested an appt, I'm doubtful I would get one with him.  I'm not sure if he even maintains a regular clinical practice, with all the research, writing and speaking he does.  I don't know of any other neuro there so I did not request anyone in particular.  At this point I'm just hoping someone will be able to fit me in on the limited dates I will be in Boston this summer.  Mainly I picked this clinic out of convenience, because of being in Boston.  It was just a nice coincidence that the clinic there is so well known and respected.   I just self-referred and forwarded all of my reports to them directly.

Alternatively I may try to get my 2nd opinion at St. Michael's in Toronto.  They also have a very good MS program, also run by a leader in MS research, Dr. Paul O'Connor.  The advantage would be that I think this would probably be covered by my provincial health insurance since it's in Canada.  I may have to make a case for being seen out of province though, and really the only reason is convenience, because I will be in Toronto later this year.  I believe I will need a referral from my GP or neuro in order to set up an appt.  

The MS clinic you visited in Philadelphia --- was it at Temple U?  That was another place I was checking out, since we plan to spend a few days in Philly after Boston.  However they can't see me till October so I'm not pursuing that.

db

ps:  Dr. Weiner happens to be (or was) MS specialist for Teri Garr and Montel Williams.  I figured that's as good an endorsement as any.  lol

[dannig]

Thanks for the welcome and rewelcome.  Is Hopkins in Maryland?  I'm barely counting my 2nd opinion as an opinion at all.  I don't want to go on and on (because I could) about how un-thorough the 2nd doc was, it's just that his resident didn't check for babinski reflex, barely checked my reflexes (only my knees once then elbows once) and had me walk a whole 4 feet.  I'm still waiting for my OCT result (since April 29th).  I was told my neuro-ophthamologist is "touring the world giving lectures so he's unable to read my test results"  Once I get those result I'm going back to my 1st neuro to talk more-but I still want a 2nd opinion.
Danni

[sllowe]

I'm remembering the screen name now. ..not remembering the story. ..I'll have to dig - but anyway - you deserve a RE-WELCOME! We've got lot of new friends as you'll see!

-SL

[sllowe]

Hey Danni,

Welcome to the forum.  We have a couple MS Centers in NJ now.  Were you looking to go out of state.

You say the Neuo you have now wants to start you on meds?  Is he/she saying CIS, or possible MS? If so, that's a good Doc, but I understand the 2nd opinion.  I'd absolutely get a 3rd in your case, especially since the 2nd wasn't thorough.

I went to Hopkins for my 2nd opinion.  They were very thorough.  I was also referred to Mt. Sinai - Dr. Lubin, by my Doc, but I already had Hopkins lined up.

Give us some more info if you feel comfortable.  This is an amazing forum, and I thank you for joining us.  Sorry your post got bumped around and I didn't see ya - things got a little nutty this am w/some spam...lol

ttys,
be well,
-SL

[dannig]

Thanks!
Where did you find your info on this doc and /or center?  Where you referred to him!  
The doctor I went to was the head of a MS center at a teaching university-so I thought I was headed in the right direction but he didn't even spend 5 min in the room w/ me.
Danni

[doublevision1]

I understand why you would be concerned in your particular situation, and would want to seek a second opinion.  I am in the process of trying to get an appointment for a second opinion at Brigham and Women's Hospital in Brookline, Mass.  The Partners MS Center is located there and headed by the renowned Dr. Howard Weiner.  It is one of the leading MS centers for treatment and research.  

I have concerns that my neuro is considering a very aggressive approach to treat my early MS.  I am planning to be in Boston this summer anyway, so thought I might as well take advantage of being near the clinic and get my second opinion there.  I will have to pay out of pocket as my provincial health insurance will not cover out of country consults, but that's ok.  If all I get out of it is reassurance I'm on the right path, then it will be worth it for the peace of mind.  Or, they may have other ideas and in that case I will be glad to find out about those.

I guess this clinic is several hours away from you by car or train.  But it might be worth checking out.  They have a great website with tons of info on MS.  Go to brighamandwomens [DOT] org.

Good luck!

db