Partners in MS Care = MS Centers?

[agate]

I received an e-mail from the MS Society about Partners in MS Care. You can enter your state or ZIP code and fine one of these Partners in MS Care near you. I did that and found only one. A couple of years ago the MS Society listed two local MS Centers. Does anyone know if a Partner in MS Care is the same as an MS Center?

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[Cherie]

It is not. Partners are supposedly only Centers or Neurologist that specialize in MS. HOWEVER, when I looked today and entered my zip code, there were 14 within 100 miles of me and i KNOW that at least 4 of them are general neurology offices. These 4 also list the fact that they have fewer than 200 patients in their practice. I called a friend who works in our local chapter office and an office can make a contribution to the NMSS above a certain amount (she did not tell me what that was) and have their information posted to draw in new patients.

[stillstANNding]

I found six comprehensive MS centers within 25 miles but the info is old. It includes a doctor I had for years who moved to Lebanon 10 years ago.

ANN

[nuthatch]

I got a big 0 for anything within 100 miles!

[agate]

That just about does it, nuthatch. You can't have MS if there's no MS neuro within 100 miles. You'll have to be undiagnosed, I guess.

Seriously--I'm sure most neuros are capable of dealing with MS insofar as it's possible to deal with MS. The neuros I've been going to since moving to this state haven't been MS neuros though the one I'd been to in WA state had an MS Center going.

[Cherie]

That just about does it, nuthatch. You can't have MS if there's no MS neuro within 100 miles. You'll have to be undiagnosed, I guess.

Seriously--I'm sure most neuros are capable of dealing with MS insofar as it's possible to deal with MS. The neuros I've been going to since moving to this state haven't been MS neuros though the one I'd been to in WA state had an MS Center going.

I disagree Agate. In general, in the "old days" that was true but with the advent of new therapies almost yearly with different methods of action and newer MRI techniques that refine images and help to see where new damage is occurring that would not show on standard MRI, most general neurologists frankly do not know the finer points that have come into play over the last 5-7 years. A general neurologist is quite acceptable if you have a stable course of the illness and are not progressing rapidly or relapsing frequently.

I do know that the goal with this program is to encourage those treating mS to keep up with education from sources other than drug companies and to expand services to those with MS to include rehab, social services, psychiatric services, vocational and disability service providers.

ANN,
Thanks for the heads up on old information. Almost half of those showing up within 100 miles of me have names of docs I know are elsewhere or retired or do not have names of docs that I know are there. They also do not have a new MS Center (about 6 years old) between Providence and Boston that has Brigham trained MS neuros on board and they have just added their 5th doc last month so it is not a totally accurate list but may be a good place for most to start looking.

[agate]

I disagree Agate. In general, in the "old days" that was true but with the advent of new therapies almost yearly with different methods of action and newer MRI techniques that refine images and help to see where new damage is occurring that would not show on standard MRI, most general neurologists frankly do not know the finer points that have come into play over the last 5-7 years. A general neurologist is quite acceptable if you have a stable course of the illness and are not progressing rapidly or relapsing frequently.

I do know that the goal with this program is to encourage those treating mS to keep up with education from sources other than drug companies and to expand services to those with MS to include rehab, social services, psychiatric services, vocational and disability service providers.

...

I must not have made my post clear. It's ideal to be near an MS Center but if there isn't one for at least 100 miles, and you probably aren't inclined to move closer to one, you probably have to settle for a general neurologist--and I thought that might be the only way for nuthatch to see a neuro.

Nuthatch, would you consider traveling whatever distance it is to the nearest MS Center once a year (or as needed) to see one of its neuros? I've heard of people doing this. They stay with someone they know in the vicinity or in a motel/hotel.

[stillstANNding]

Cherie, I think the missing MS Center that you mention may be one with Sal Napoli. He was the Silvia Lawry (?sp) Fellow at the Brigham MS Center. He saved my life, in a way, by adding Nortriptyline 30mg to my Tegretol to stop constant TN.

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ANN

[Virginia]

There were 12 for me. That includes the one I go to.

[Cherie]

ANN You are correct!

I did send an email today to the one person left here in RI to staff NMSS since they regionalized and let her know of the inaccuracies and discrepancies in what we are finding. Hopefully they will look at and correct.

[stillstANNding]

About the regionalization of the NMSS, Cherie. We had a big, vibrant Massachusetts chapter. A state publication that was worth getting. Now we have been lumped in w NH, ME, and VT. I get notices of things ridiculously far away from them and the local publication is more like a letter.

ANN

[Cherie]

About the regionalization of the NMSS, Cherie. We had a big, vibrant Massachusetts chapter. A state publication that was worth getting. Now we have been lumped in w NH, ME, and VT. I get notices of things ridiculously far away from them and the local publication is more like a letter.

ANN

Nope: it is all 5 NE States but CT which has a HUGE chapter and a summer camp at the Easter Seals facility near Hartford. I, too, feel like we have all lost benefit and program and personalization. For the past three years, someone from the Boston office has called, (when I have inquired) to ask me to do a "canned" program in RI for a meeting. I am sorry , but the programs that are "canned" like "mood and MS", "Cognition and MS", "Relationships and MS", should be online and the in person programs should be personal and relatable. That is my personal and professional opinion. The NMSS has diminished greatly with this move to regionalize and "can" its programs.

[stillstANNding]

Oh, RI is in w the rest of us? Sad for the whole bunch. Our magazine was award winning.

ANN

[Cherie]

Ours too. No longer. Now it is a folded over bunch of bulletin that has little local information or story at all. I hate it. And I dislike the canned programs that are coming from National that really don't address what we want to hear. They get a doc or nurse or therapist to show the slides and read their narration and then that person may or may not be able to answer the questions raised by the group. Also, they expect the professional to donate their time to do the program. NINE CENTS out of every dollar raised goes into programs that assist us as PWMS. 47% goes towards research and the rest towards salaries and rents.

[stillstANNding]

I also wanted to make it clear that, "Partner's in MS Care" is not the same as Partner's Healthcare which has an excellent MS Center at the Brigham in Boston.

ANN