Who Treats Your MS?

[Lulu54]

We've seen this question more than a few times lately - is it really that important to have an MS Neurologist in charge of your care, versus a regular Neurologist?  Can your Primary Care Physcian (PCP) do just as well with your treatment once a diagnosis has been made?

If you have any additional comments to share, please do so......

Which type of doctor takes care of your MS treatments (post-diagnosis)?

[willowwoman7]

I see a neurologist whose special "interest" is MS. He is big on DMD's and has been pushing me to try tysabri. I won't simply because I also have lupus and an ai kidney desease. My pcp agress with those things against me, tysabri would be a bad choice. So, since I've been reacting poorly to the copaxone, I'm down to managing symptoms. An Amish friend of mine who has MS swears by a formulation of Accai juice and a special vitamin she takes. She and her husband want me to try try it. I don't know, maybe I will. It's kind of pricey, though.

[Karen99]

Both neurologists who have treated me over the years have been regular neurologist, but both had a special interest in MS patients.  Both had procedures in place that ensured I was followed correctly by having simple questionaires to fill out just before I went to the exam room.  That way they could discuss with me in detail those concerns and address them.  Both strongly recommended the DMD's.  

I did go to a MS Specialists at a prestigious Medical Center for a second opinion when I was diagnosed.  I was not impressed at all.  Nothing special to be found there.  Perhaps they are helpful for diagnosing difficult cases, but I did notice that their practice was set up in factory line style.  I stuck with my regular neuro who likes MS patients.  Some find us fascinating so their attitude is upbeat and positive, thus makes them very approachable.  AND they answer questions happily and easily.  

[Salamander2]

I saw two neuro.  Neither were MS specialists.  The first had an interest in migraines, the second (who I am currently seeing) has an interest in MS.  I have made no effort to find a specialist in MS because I feel like if a Neuro has a special interest, the will do more research and continue education in the area they are interested in. Hope that makes sense.  
My first neuro obsessed about my migraines which had actually been improving and focused on them.  Had a 2nd opinion with a new Neuro who reviewed all testing results #1 had ordered, in addition to his visit notes.  She did a through clinical exam (that #1 didn't do),  and told me at that first visit that we had wasted time and she was going to recommend I start a DMD as soon as we could get it approved.  I was impressed with her, especially when Dr. Kantor said he recommend DMD's as soon as MS was the probable diagnosis. I feel like I hit the jackpot when I found her.  
Blessings,
Sally

[Lulu54]

I find it interesting that only a little over 50% of us see an MS specialist.  I wish more of our members had voted so we could see if that number holds true for a larger population.  

[Udkas]

Hi,
I see a Neurologist at the MS Clinic, and he specials in diagnosing neuro muscular and nervous system disorders, but he also is the head consultant neuro at the hospital, so I am assuming he is a MS Specialist, He is also trained in neuro physiology, I don't care what letter's he has after his name, as sometimes you can go to the most qualified person in the world on paper but in practical side of things they can lack compassion and skills. Often real learning in any career is "on the job from experience".

However I am assuming someone that is dealing with a large volume of patients with MS would be more up to date on the latest treatments etc. than someone who doesn't.

BUT I do care how he cares for me and I can't fault his manners, his people skills and his willingness to explain things and keep testing etc., monitoring etc.  I am lucky to have this Dr and be able to have him caring for me, I hope he doesn't leave us and go back to his home country.

Cheers,
Udkas
(Diagnosed with TM?) normal MRI imaging.

I am lucky, as the Dr I see seems to have knowledge and people skills,

[truelove47]

I feel everyone who is trying to get dx'ed or is dx'ed should go to an MS neuro.
Anyone, with a strong probablity of ms is checked out for clinical findings( which i think are just as important as mri's and lp's.)
Specialists are just that SPECIALISTS.  They can see things which maybe we cannot discribe properly.Your body will not lie. If there is something there, a good ms specialist will pick it up, A DMV is a must for all suspected of having MS.
They are on top of the newest information and have the experience from what they have seen to be able to weed symptoms in or out.   Clincal findings and past history are very important. Something that you think is important or not, an ms neuro probably at some point in their career has seen it. Just my opinon.                      Linda

[opie74]

I see an Optho Neurologist.  He sees the most MS patients in the area.  He is big on DMD's and sennd all of us to an MS clinic at leist once every other year.  The specalist is 5 hours away, and his office staff treats you as a number.  m local guy gave me his cell phone, and told me to call him nights and weekends ifI was haveing a relaps.  I guess that sometimes the specalists see too many patients to really care about the individual.  

Got to run, the baby us up and screaming!
Ann

[Lulu54]

Is there anything you can do to ammend or change your records to accurately reflect your condition and experience with the Citalopram?  I would work to get that fixed before your status as hysterical woman become permanently imprinted into your record.  

Good luck!
Lulu

[Eyesnlegs]

Over in the UK finding an MS specialist is nigh impossible - any neuro can be a self styled specialist as long as he has an MS nurse affiliated to his clinic!!

Well I have had to vote 'other' as at the moment the only treatment I get is any that I administer over the counter or alternative therapies like reflexology and massage that help me relax a little.

When I see the neuro again on Wednesday I will check back and let you know if they are even going to even monitor me let alone treat me.

My GP who was going to help me wrote to the neuro ahead of my appointment and I picked up a copy of her letter today that is supposed to help me  - all she said was "she has not developed any further neurological problems since she saw you last December, however, she has expressed some concerns regarding the future of her symptoms and whether she may require any follow up scans to monitor disease progress"

and then proceeds to say

"I recently started her on a trial of Citalopram to see if this would help improve any of the anxiety she is feeling" -

no mention of the fact that I took 3 tablets - had a reaction to them and we decided that I didn't need them as my anxiety is related to my lack of treatment.

and she was meant to help me by going back through my history and asking him to do something - is that what she is hinting at - because mentioning anxiety will only start this guy off again down the stress / depression / neurotic woman road I fear.

Wish me luck guys!!

Pat

[essdipity]

Good question. Any neuro can be self-styled as an MS specialist, but it ain't necessarily so. From what I understand, the Nat'l MS Society simply repeats what a doctor tells them, and of course very often the person really does specialize in MS. But there's no way to be sure from that.

Quix references the Consortium of MS Clinics. These are MS specialists for sure, so check their web site. Very often they do practice in a group setting such as a clinic.

You may be right that a younger doctor would be more current about MS, I don't know. Personally, I'd prefer all my doctors to be in their 40s or 50s. That way they have plenty of experience and I hope are in top form generally.

ess

[jdhecaj]

What is an MS specialist? Is that someone who just hangs a shingle on his door that identifies him as an MS Specialist? There are none in the area I live in. I would hve to drive a distance to get to find & get one. Of the three hospitals in town one includes MS in it's commercial along wth the other things that are treated there, but MS got a mention in ther commercial. The NMS Society recommends the 3 neuro's practicing there. From another MS person, I have heard she goes there and is looking to go somewhere else because she feels her doc is not very responsive. But he is just on of 3, and they treat all neurological conditions. I go to a neurological clinic with 6 or 8 neuro's. I'm happy with her and she is young so I feel she is up on all the current trends in MS.

[essdipity]

Interesting point. I have a neighbor who says she's had MS for 10 years, treated by a non-specializing neuro. He pooh-poohs the DMS, saying "Bad side effects, who needs 'em?"

My neighbor concurs with this totally. She says she does just fine without them. Her MS is fine too. Whenever she needs it, her neuro just gives her a steroid infusion (!). Her MRIs are fine too, not much change.

I don't think it even occurs to her that she gets infusions because she's having relapses! She doesn't realize that her disease is progressing, regardless of what her MRIs look like. I of course don't argue with her, and she didn't ask my advice.

Well, that's another reason to see a MS specialist.

ess                                                  

[sllowe]

I participated in the poll, and just hope it took as the screen froze....

I see a regular neuro.  If anyone is interested, the results of the study Quix refers to worth the read to see how much more satisfied people are with the specialist.

[Quixotic1]

there have been some very telling studies about how MS patients are treated by the various specialties.  In people with MS who are treated by their PCP something around 75% WERE NOT ON A DMD.  They also report lower quality of life as they had less effective symptomatic treament.

Even in people treated by a neurologist the number not on DMDs was unacceptably large.

the study showed that people reported greater symptomatic treatment and use of up-to-date meds such as DMDs only with MS Specialists.

This study was from the Consortium of MS Clinics, last year sometime.

Quix

[PastorDan]

Can't vote here; I'm pre-diagnosis, but I personally don't care who treats whatever this is, as long as they treat it seriously, effectively, and promptly.  That vent having been released, I'll tell you that (assuming I am ever dx'ed) I would vote for an MS Neuro if there is one within a reasonable distance, but beyond that, I'd think my PCP is more likely to listen to me than a general neuro.  Don't know why I feel that way, but I know my current PCP, and the last one, seemed to appreciate a patient who researches and seeks to understand their own health situations.  I've received the impression so far that the general neuro doesn't get that in his upbringing, somehow.