MS Specialist

[Ojibajo]

I see a lot of talk on here regarding MS Specialists. I have a few questions:

Should everyone one with MS see an MS Specialist?

How do you know if your neurologist is an MS Specialist?

How does one find an MS Specialist (in the US)?

[Ojibajo]

Did I check out the one that others recommended? Not yet. I've been so swamped at work that I haven't really had a chance. I also have a few non-MS health things going on that have sort of taken priority the past couple of months. I may just call and see what his schedule looks like over the next couple of weeks.

[SarahL2491]

Did you follow up with the new neuro as you considered?  

Just checking

[sllowe]

I say go for it and try another then - doesn't mean you have to leave your steady for good. Just test out the others and see if it's a better fit for you! You'll feel better - nothing worse than communication issues.

[Ojibajo]

I'm not particularly thrilled with my neuro. I don't think that she is terrible, but I do feel like there is a communication barrier. Perhaps it's just our cultural differences. I'm not sure. She has said some things to me that I know are in fact not correct. There is one in town that a few people have recommended to me. I am also not far from the University of Michigan, and I know that they have an MS Center there. Well I'm not all that close either, but I'm only like 2 hours away. A two-hour drives isn't that far away to me.

Well thanks for the feedback.

[sllowe]

Hi Oji,

Not all MSers see an MS specialist. A good neuro w/many MS patients can be all one needs for good care.

You can ask you neuro how many MS patients he or she sees.

You can parooz the local hospitals websites in the neurology departments and read bios to find those specializing exclusively in MS.

-shell

[doublevision1]

re: should everyone with MS se an MS specialist, I agree with Minnie and Alex's responses.  I think it depends on the case.  I think if it's a complicated case of MS, or an ambiguous case, etc, then probably a MS specialist is a good idea.  However I'm sure there are many qualifiied general neuros who do a good job of treating MS.   Depending on availiability, geography, etc some may only have the option of a general neuro, and in that case I would research which ones are most experienced with MS, and go with one of them.

Since I had to travel to a larger city anyway, I chose (yes, in Canada we get to choose our own docs, lol) a MS specialist at a teaching facility because I was very interest in learning about the current and most promising research underway and potentially participating as a study subject.  Turns out the distance was prohibitive for participating, so I didn't do so.  I recently relocated to a large city, was referred to a new MS specialist, also at a teaching facility which is even more involved in research, so perhaps there will be a study here for which I'd qualify as a candidate.

[doublevision1]

The NMSS website has a page on a 'Partners in MS Care' program.  Looks like one way to find quality MS specialists in the U.S.  

Here's the blurb and a link to the page, which includes a tool for finding these centres in your state:

"The Partners in MS Care program recognizes and supports quality MS care. The program involves health care professionals in the areas of neurology, mental health and rehabilitation, as well as sites that provide multi-disciplinary, comprehensive MS care. Health care professionals recognized as Partners in MS Care demonstrate knowledge and experience in MS care; have a special interest in treating people living with multiple sclerosis and work closely with the National MS Society.

A Partner in MS Care designated as a Center for Comprehensive MS Care has additionally shown the ability to offer a multi-disciplinary model of care to address the often complex needs of many people with MS. They offer access to a full array of medical, psycho-social and rehabilitation services delivered in a coordinated fashion where providers share common goals for patient outcomes. Centers for Comprehensive MS Care are designated by the icon:

To find your Partner in MS Care, use the search tools on the left.

New Partners in MS Care are added routinely, however, if you do not find what you are searching for, or want personal assistance, please contact an MS Navigator for other referral sources at 1-800-344-4867."

http://www.nationalmssociety.org/living-with-multiple-sclerosis/getting-the-care-you-need/partners-in-ms-care/index.aspx

[HVAC]

There is a shortage of MS Specialists. I only get to see mine every 16 months. If your Neurologist knows about MS and helps you do not need a MS Specialist. Some Neurologists do not know that much about MS. Neurologists can specialize in many things such as headaches. I had a Neurologist who specialized in headaches and she told me I did not have MS when I did, simply because she knew so little about MS.

The advantage of a MS Specialist is they are up on the latest in MS diagnosing and treatment.

Alex

[LilMinnie]

I have a friend and a coworker with  MS who see my neurologist. He is not an MS specialist per se, but he is very good and has quite a few MS patients.

Having said that, I am not diagnosed, and I believe he suspects MS and has referred me to an MS specialist at a research hospital.

If you are diagnosed and can find an MS specialist close to you (although some people travel quite a distance and even stay overnight) then that may be the way to go. On the other hand, if you have a neurologist you like and you are confident in, that may be a good solution.

I guess it hinges on how far you can travel, the availability of a specialist, and how satisfied you are with your treatment.

All the best, Hugs Minnie