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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!
Best Answer
572651 tn?1530999357
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.

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Avatar universal
Thanks for posting that link. I have a question. Why are some of the big centers like Duke and Ochsner not listed on there?

When I see my Neuro it is for the 10 min in and out like others talk about. So I picked up the phone and got an appt with an MS Specialist at Ochsner Baptist in New Orleans within a month. I always thought your doctor had to refer you but I found out that to those big research type facilities they have a catagory of "self refering"  and all I have to do is bring all my mri's etc. Their MS dept told me to allow at least 2 hours for my appt. What a pleasant surprise.

I had new MRI's, MRA done the last week of Dec and my Neuro appt is tomorrow to get the results since my Doc had been on an almost month long vacation to the Holy Land. GRRRRRRR.  With MS comes new found patience when one is a patient. Me thinks its time for a change - don't you agree.


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Avatar universal
Thanks soo much for the answers. I'm going to take a look into it this week. Then I'll talk to my nuero about it next week. I know his specialty is migraines. He does look up aome stuff for me, but I think I would still like to atleast have a consult w/ a MS specialist.

Thanks again for all the help! Having a community of people to help or just listen has drastically decreased my stress level already.
Helpful - 0
2034625 tn?1392643292
This is a great question and in my case, has yet to be seen.  I'm working on getting an appointment with an MS specialist this week and I found him on http://msneuroratings.com/  

There are some patient opinions (good, bad, and in between that I'd use your own judgment while sorting through them), more in the big cities.  
Helpful - 0
Avatar universal
I'm sorry your having to deal with this all... it is a pain. I'm not sure what to say. Hopefully someone else can give you some advice. I don't know if I really care for my nuero. Sometimes he's great other times not so much, but I know I'm that same way. They are still people after all.

Helpful - 0
Avatar universal
What a great question.  My neuro is very accessible and I do like him.  He sent me to a specialist for Myastenia Gravis and I have an appt with a MS specialist on Thursday (this appt was made last Sept - she rescheduled once, and this is the first appointment available).   The Myastenia Gravis specialist said to me - turf war - now it's time to pick and choose - who treats you for this disease.  I honestly hadn't even considered I'd be having to decide this.  I wasn't ready, having giving it no thought at all. Is it disloyal to have a specialist (for something not very common) treat you, when you love your neuro?  If I get out of limboland and the MS specialist says I do have MS - then what ? who treats me?  a specialist it took a good 6 months for an appt? or the guy I can reach any time I need to?
Not sure what I will do - it's such a great question
Maureen
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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.
Helpful - 0
3054080 tn?1358722856
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 :)
Helpful - 0
429700 tn?1308007823
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.  
Helpful - 0
488198 tn?1493875092
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.
Helpful - 0
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.
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