Page 1 of 2 12 LastLast
Results 1 to 10 of 16

Thread: Partners in MS Care = MS Centers?

  1. #1
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    8,225
    Blog Entries
    12

    Default Partners in MS Care = MS Centers?

    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?

    You can try this for your area here:

    https://www.nationalmssociety.org/Tr...ers-in-MS-Care
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  2. The following 4 users say "thanks"


  3. #2
    Distinguished Community Member Cherie's Avatar
    Join Date
    Oct 2006
    Location
    Southeastern NE
    Posts
    1,589

    Default

    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.

  4. The following 6 users say "thanks"


  5. #3
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    Red Sox Nation :D
    Posts
    3,241

    Default

    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
    There comes a time when silence is betrayal.- MLK

  6. The following 6 users say "thanks"


  7. #4
    Distinguished Community Member nuthatch's Avatar
    Join Date
    Oct 2006
    Location
    California
    Posts
    1,159

    Default

    I got a big 0 for anything within 100 miles!

  8. The following 5 users say "thanks"


  9. #5
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    8,225
    Blog Entries
    12

    Default

    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.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  10. The following 6 users say "thanks"


  11. #6
    Distinguished Community Member Cherie's Avatar
    Join Date
    Oct 2006
    Location
    Southeastern NE
    Posts
    1,589

    Default

    Quote Originally Posted by agate View Post
    This quote is hidden because you are ignoring this member. Show Quote
    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.

  12. The following 6 users say "thanks"


  13. #7
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    8,225
    Blog Entries
    12

    Default

    Quote Originally Posted by Cherie View Post
    This quote is hidden because you are ignoring this member. Show Quote
    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.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  14. The following 5 users say "thanks"


  15. #8
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    Red Sox Nation :D
    Posts
    3,241

    Default

    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.

    http://www.neuroinstitutene.com/2014...our-doctors-2/

    ANN
    There comes a time when silence is betrayal.- MLK

  16. The following 6 users say "thanks"


  17. #9
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    North Carolina
    Posts
    4,444

    Default

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

  18. The following 5 users say "thanks"


  19. #10
    Distinguished Community Member Cherie's Avatar
    Join Date
    Oct 2006
    Location
    Southeastern NE
    Posts
    1,589

    Default

    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.

  20. The following 5 users say "thanks"


Page 1 of 2 12 LastLast

Similar Threads

  1. Replies: 1
    Last Post: 03-09-2018, 04:29 AM
  2. Care Partners Retreat
    By jzendrian in forum Caregiver Support
    Replies: 0
    Last Post: 09-03-2015, 07:33 AM
  3. Replies: 5
    Last Post: 01-12-2014, 10:21 AM
  4. Replies: 6
    Last Post: 06-14-2013, 09:50 PM
  5. CCSVI as presented at the Consortium of MS Centers
    By Cherie in forum Multiple Sclerosis
    Replies: 2
    Last Post: 06-13-2013, 06:44 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.