MS Centers

[PastorDan]

Well-meaning friends have been suggesting this place or that place to which I should high-tail it.  I know we've been quite direct in our expressions regarding the neuros we've experienced (for better or worse), but no one has named names in a discussion post, from my limited experience.  Maybe I need to go back to read all those terms and conditions that I swore to MedHelp I would always abide by, but I know that it's been suggested that some seeking a new avenue should pursue those who are members of the Coalition of Multiple Sclerosis Centers.  My question today is, is it acceptable to ask about specific MS centers?  I'm waiting to hear from one, have another in mind, and keep hearing suggestions (from less informed sources) that I should check out another.  Of these, the first and third are CMSC members.  The third is probably a good hundred miles away, maybe a bit more.  I'd like to know if we can discuss each others' experience with a particular center, hospital, etc.

[PastorDan]

Happy anniversary and sweet dreams.

My insurance company is one of the largest ones around our area.  My plan (employer provided) is a PPO, meaning that the company has negotiated contracts with doctors to see their patients for certain rates, and patients are free to choose whichever doc they'd like, with the understanding that the company will pay a much higher share of the cost if the patient selects a doc who is among their preferred providers.  Since my insurer is so large, most docs want to sign up with them, and it works pretty well for me.  Besides doctors, they have preferred hospitals, suppliers, etc.  Most of my medical care costs me next to nothing.  It costs my employer a bundle, though, and they're tax supported.

Others, probably in smaller groups, likely pay more in premiums and get less in coverage.

[doublevision1]

I thinking word of mouth recommendations are your bet; with a certain amount of luck and good timing thrown is as Lulu points out.  I would definitely focus on MS specialists and not generic neurologists.  It stands to reason that the more you deal with the same condition, the more expert you will become.  I think the CMSC is likely to be a great source of MS specialists.

Last summer I had a one-time appt for a second opinion, at the Partners MS Clinic in Boston at Brigham & Women's Hospital.  The guy I saw seemed to know his stuff, and I picked that specific facility because of the large role they play contributing to the body of knowledge about MS.  Dr. H. Weiner, its founder, seems to be a well respected neuro and researcher.  The neuro I saw there more or less agreed with my regular neuro on everything about my case, except that he disagreed with the use of mitoxantrone as a second line treatment, as had been suggested by my own neuro.  Otherwise, what he said reassured me that my neuro is on the right track.   They offered to do updated MRI's at a price tag of about $15,000; I declined and said I would rather get them done at home at no charge to me, thank you.  Esp when he reviewed my films and said my radiologist is doing them appropriately.  Now, if it turns out I have NMO and not MS, then docs on both sides of the border were wrong.  Perhaps I'll just have to go to Japan next, since they see more NMO there!  I'm only half kidding.

Does your insurance company have anything to say about where you go or whom you may see?

[ChunkyMonkeysMommy]

Unfortunately, I'm not sure that checking with the medical board is very reliable, either. The quack that I used to see was ON the state medical board! Honestly, everyone that I know that has been to see the man, still wonders how he still practices medicine, let alone secures a seat on the medical board. Shoot, the man is a criminal, literally! All the taxes that he was taking out of his employees' paychecks, he didn't even turn in to the IRS! HE KEPT IT ALL!!! I could say so much more about this man, professionally and personally, as to his morals, but it would go on forever. How do they choose the doctors that are on the medical board, anyway?

Just curious,
CMM

[PastorDan]

Yes, I understand that about the litigiousness of society these days.  In fact, in my will there is a stipulation that, should all of the persons I've named as potential executors of my estate be unable to serve, the court may appoint whoever it selects, AS LONG AS THAT PERSON IS NOT A LAWYER.

Still, if I'm looking at two potential physicians with similar experience and training, and in a similar period, one's been a defendant in eleven cases and another in two, I have to believe that one is doing something better than the other, if only being nicer to their patients.

[Lulu54]

PD,
I wouldn't put too much credence in the lawsuit record- you know we live in a litigious society and sue at the drop of a dime.  Sometimes we even sue and win over things we should be held responsible for.  I believe the statistics are pretty high on the number of times a physician is sued in their career lifetime.  AND it is deceptive because it is cheaper for them to settle than fight to clear their names.  I wouldn't lean on this evidence too much.

If you really want the skinny, contact the state medical board and ask how many times they have been brought up on charges before them.

Later,
L

[PastorDan]

Thanks again.  I'll keep that in mind.  I was asking about CC in order to have a "Plan D", but OSU is my "Plan B".  I've already expressed how the first plan worked out, though I might need a dart board or a punching bag to relieve some of the repressed feelings.

Oh, after the fact, it was suggested that I should look on the county clerk of courts website to see how many times my ex-neuro had been sued.  Six times over the past nine years.  Good or bad?  I haven't a clue.  Do wish I could read the judgments, or at least know if he won or lost.  That's the county in which he practices; he lives in this county, and I haven't looked at that.  Regardless, just another thought on finding info about a prospective doctor.

[Lulu54]

PD,
Funny you bring that up because at the MS luncheon I went to last week I sat next to a total stranger who started discussing treatment and where she went.  She LOVES Cleveland Clinic and absolutely had nothing but bad things to say about her experience at OSU.  You know my feelings about OSU.  I have nothing but good things to say about my treatment and care there.  She saw a woman doctor 15 years ago whose name she could not remember and I saw a man 6 months ago whose name I will never forget.

You would be hard pressed to find anyone on this forum with good things to say about the MS clinic at Cleveland or Mayo/MN but we hear really good things about the care at Mayo/AZ (except for only having a 1.5T MRI).

My point is time and personnel involved can make all the difference in the world.  Had I not been satisfied at OSU, I would have looked at going to the MS center in Cincinnati.  

Incidentally, my PCP now has 5 of us MS patients in her practice - and she has sent every one of us up to Columbus to OSU, and all of us are satisfied.  It amazes me that she has that many MS patients....

If you want to talk names, I would agree with ess about keeping it to PM's and not publicly.  Unless of course you have good things to say, and then by all means say it out loud for everyone to hear.

Satisfied,
Lulu

[PastorDan]

Thanks.  I was thinking in particular about the Cleveland Clinic.  They have a name for their MS center which I forget; it doesn't have "Cleveland Clinic" in the name.  It's the one that's quite a hike from here for me (nothing like Mayo, though!).  A sister was there for a heart issue many years ago, and more recently a dear longtime family friend twice for complicated cancer of the kidneys.  Both were pleased.  (One's dead now, but that's beside the point, right?)  Anyway, anybody here been there?

[essdipity]

Sure, we have this kind of discussion all the time, and particularly about the Mayo Clinic! Ask whatever you'd like. Quix has strongly suggested going to one of the CMSCs, of which there are quite a few, so that's an excellent criterion to start with.

It makes sense to try places closer to home at first, and if a place you're considering has a 3T MRI, that could be the clincher. Usually you can find this out on the web, but if not, a call should do it.

When it comes to actual doctors, I think that should be kept in the realm of the PM, although I don't think there's some prohibition about that. Many forum members refer to Dr. H or Dr. P, and if someone else has experience with him or her, they often discuss this offline.

This forum is a great place for recommendations (and warnings), and I encourage you to take full advantage.

ess