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Multiple Sclerosis Community
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Avatar universal

finding a MS specialist

It seems to be that most of the people on here see an MS specialist. I have a good nuerologist, but I don't always feel that he understands the disease or maybe it's just me not explaining things well.

The only MS specialist I know of in town fired me, but after the way I was treated I honestly wouldn't go back if he was the last doctor on the planet. So I guess my question is does an MS doc really make a difference? The one I saw didn't want to listen to me about my symptomd or side effect for the meds, and still didn't really explain anything to me. He also, IMO, seemed to have "the god complex" that some doctors get.

So are they that important, and how do you find one that truely specializes in MS? When I google ones in my area, they say that they specialize in all kinds of diseases.

Thanks for any help, advice, or opinions!
11 Responses
572651 tn?1531002957
there is an organization that works on certifying neurologists in the area of MS  and you can always check their directory for one near you - you can find them at mscare.org (there are lots of other good resources on their site)

Their member listing is accessible at -

http://www.mscare.org/cmsc/index.php?option=com_center_directory&Itemid=1379

As for a specialist over a general neuro, I would say it depends on the doctors.  Brilliant answer, huh?  LOL

But consider, if you are a neurologist and trying to stay on top of the latest news and treatment advances for stroke, eplilepsy, migraines, ALS, Parkinsons, etc. how much time is there to spend on MS?  The MS field is exploding with developments these days and I think the MS specialists can devote their attention specifically to this disease.  

In the long run for those of us who are diagnosed and doing ok on therapy, that might not matter.  But for the others who are still looking for answers or having constant relapses, that could certainly be a factor.

Ultimately you want to find a doctor who is accessible and you feel comfortable with because this is a long-term relationship.

Avatar universal
I also don't see an MS specialist. At least I don't think that she is one. She's a neurologist and on the website it lists the different neurological ailments that she treats and MS is one of them, but I really don't think she is a specialist. I'm not particularly thrilled with her, but I don't know if everyone should go to a specialist or if they are only those who have very severe symptoms or for those whom he disease has progressed to a more disabling level.
488198 tn?1493878692
I'm not sure it's true that "most people on here see an MS specialist" ... it's not true in my case.

If you have a neurologist or another doctor that serves you well, stick with them. If your MS presents unusually and your neurologist is too puzzled to help you, maybe then you ask him if you should consult someone else.
429700 tn?1308011423
If you aren't happy with your care you can see an MS specialist who can help guide your neurologist.  You can see both.  An MS specialist has made a huge difference for me.  I stopped seeing my regular neurologist and started to see the MS specialist.  I do see one drawback.  They are often very booked.  I can't see her until another year, but in the meantime see her nurse practitioner.  The nurse practitioner has been awesome though.  If anything major comes up she consults the specialist.  

Since my specialist is in a major teaching hospital, there is the latest in technology with the equipment.  They have an OCT machine to measure the thickness of the optic nerve, sonograms to see if the bladder is emptying, and other equipment right in the office readily accessible.  Plus, people do attend MS conferences and hear the latest in MS research and treatment.  I'm told of some of these medicines to research before my next doctor visit and am emailed test results, etc.  If I have a question,  can reach my doctor by email.  

Additionally, she has ordered tests that my regular neurologist never considered.  I've gotten a neuro-  psych eval to evaluate my cognitive function for.baseline and gave me tips to help me cope.  I've gotten an emulation from a sleep doctor which lead me to the proper medicines to control the fatigue and to get the deep REM sleep I was missing.  

So yes, a good MS specialist could make a huge difference.  It all depends if you feel like you're getting good treatment, though.  There are some wonderful neurologist out there.  
3054080 tn?1358726456
When I first reported my symptoms, I was referred to an MS  specialist. I didn't request it and still really don't know what is going on.

Long story short, the "specialist" only spent about ten minutes with me. No neurological tests. Wasn't interested in my brief, one-page timeline. Basically blew me off.

I found another neurologist on my own and he is great. I recently found out a coworker and family friend who both HAVE MS see him. His patients, from talking to people in the waiting room, really like him.

I am not necessarily concerned about bedside manner, but I do want to be taken seriously. If you are satisfied with the care you are receiving then I say if it ain't broke, don't fix it ;-) Based on my experience, MS specialists don't want to be bothered by those of us who present a challenge, who are not already diagnosed, or who aren't "textbook." Again, just my two cents.

Best of luck, Minnie :)
Avatar universal
Thank you all for the info and advice. I see my neuro next week so maybe I'll ask him his opinion on seeing an MS specialist. I have a feeling I'm going to have to go a little way to see one, but that's ok if they may have a little guidance to give me or the nuero.
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