After my diagnosis a few months ago, my Neurologist said "Call me if you need me". Basically, it was bye-bye (or so I felt). My question is: What would a Neurologist specializing in MS do differently. I like my Neurologist, but, liking him doesn't mean he is the best "fit" for MS.
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Well, I had been "checking in" with my old neurologist (general) once a year, and after a 5-minute exam recommended me to keep it up (with the Betaseron, I guess). But recently I had a problem that wouldn't go away with pills or IV steroid, so neuro recommended me to an MS specialist.
I knew right away this was a good move:
-she knew what MS hug was
-she knows what the latest treatments and research are
So to his credit, as soon as my old neuro realized he wasn't helping me, he referred me to a specialist. But I have to wonder "what if"? Would I be in better condition today if I'd been seeing a specialist all along? I'll never know.Proud Mom of three kids!
dx'd 1996 -
I just generally feel more comfortable with my specialist. I had to switch from my general neurologist as he was very impersonal and I felt like just another $ to him.Comment
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Definitely switch. My last time I was in the hospital for an esaserbation, the neuros that came by on their rounds they were so knowledgeable with MS, they actually "knew" the questions to ask, before I could tell them what was going on. It was so impressive. My actual neuro that diagnosed me left the practice, and the practice actually had the fortitude to send all MS patients to another practice. That was the smartest thing they could have done. I definitely think MS patients should be with a Neuro that specifically specializes in MS alone. They know exactly what they are dealing with.BlessMS
Diagnosed 8/25/11 Copaxone Phil 4:13Comment
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Because of how complex MS is, it is almost necessary, at least in the patient's best interest to see a MS specialist. It takes specialized training and confidence to make a MS diagnoisis.
After I relocated to another state, I was referred to a General Neuro who reversed my 5yr MS diagnosis, stating that my clinical exam was near normal and MRIs with 20+ lesions were TIAs .
Within a couple of weeks I saw a MS neuro who after looking at my MRIs said he didn't know what else the other doc could possibly think my dx could be but MS, and my clinical exam was not normal.Comment
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I also prefer to see my MS specialist however I think it is worth pointing out that even the fancy MS specialists often have very little to offer us other than meds to hopefully reduce our symptoms.He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
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Jules, point taken. Pre-dx I saw the MS Specialist guru, trained in Italy, elderly/80yoa, on the board of the NMSS, who in retrospect I'm convinced he knew I had MS and had it for a long time, but had recovered with no major losses.
I'm convinced he though if I could get through the exacerbation without a dx that I would recover as I had in the past, with utmost confidence in his theory.
He mentioned what a burden a dx would be, becoming uninsurable w/MS dx, expensive meds, etc.
In reality, my then 2 year old MRIs w/20+ lesions had already accomplished that w/out a MS dx. There was a paternal attitude and tone in his discussions with me. I know now to run, don't walk, away from the next doc who sounds like that.
So, yes even MS Specialist can suffer the God complex, or from their own convictions.Comment
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I have had the same question. I do wish that I had more of a option but the only MS specialist for me is a 2 hour drive away. Luckily I feel like my general neuro is good and I am very happy with him. I have made the trip to get a second opinion from the specialist and didn't feel like there was much of a difference in doctors which is a good thing.
I say if you have a local option of a specialist then I would go with them.Comment
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You make a good point and especially for maintenance. I don't see the need to make a trek if you have a nice relationship with your regular neuro.Originally posted by vwradar View Post
In the big picture I think it is important to see a specialist for diagnosis or if there are major changes in your baseline I would consider getting a second opinion in any aspect of health care not just MS.He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
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Thank you all for your replies. I'm leaning towards calling a MS specialist. One of the things that convinced me, was when I called to tell him that I've been having muscle spasms (just a few times a day), to the right of my spine, he stated " you pulled a muscle or have a UTI". It wasn't till I read about back aches during exacerbations on this forum that I figured it out.Comment
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Originally posted by vwradar View Post
My specialist is 2 1/2 hours away from me. I have to take a day off from work to go see her. I realize that that might not be a viable option for everyone but, for me, the peace of mind I get from being 100% satisfied with my doctors is priceless.Comment
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The first neuro I saw this summer took one look at me and my films and said "I'm 85% certain you have MS.I am not an MS specialist. You need to see an MS specialist."
I thank her for this every day
My MS guru eats and sleeps MS. It is his reason for being. This is the guy I want working for me
At weddings, my Aunts would poke me in the ribs and cackle "You're next!". They stopped when I started doing the same to them at funerals. Dave BarryComment
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MS specialist
I went to a neurologist for years and he finally just told me there is nothing more that can be done for me. (Of course, for some time it was just a 5 minute visit and goodbye so it didn't matter.) I was so fortunate that I found a lady neurologist in Sioux Falls, SD who specializes in MS. She is so good! It has made a world of difference in my life!Comment
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My neuro diagnosed me with M.S. I think thru process of elimination.set me up to start coxapane sent me to an M.S. spec who said maybe not M.S. i'm not sure what to do. my left leg is getting heavier and weaker and hard to drag around, stairs are a little tougher. i'm at a stand still. i've been searching every possibility. if not M.S. , then what?
I have three lesions on the brain, lumbar puncture had markers but.........Comment
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Question
Is there an actual board certification which distinguishes "general" neurologists from those who call themselves MS "specialists"?
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