Do MS Specialists Know Best?

[Jennagain]

So I go back to my MS Specialist on Monday to get all my test results. I am really hoping to find out if I have MS or some sort of mimic.

GP sent me to regular neuro, who then sent me to MS Specialist. Both of them do not think I have MS, but rather celiac which is irritating my brain and causing all my symptoms. Neither did any tests, just basing it on my history. I thought it was a bizarre theory given I had an attack eight years ago with a complete, spontaneous recovery and continued to eat gluten. Only had a second attack six months ago and have made a partial recovery while continuing to eat gluten as well.

My GP wasn't happy I was questioning their theory and told me if I wanted to get better I should cut out gluten. Again thought it was odd as I hadn't even had the test yet.

MS Specialist did not buy into their theory, but ran the celiac test anyway. In two days we will know if the celiac theory was right and what the other test results are.

This is the second regular neuro I have seen and the second time I have had conflicting opinions. First neuro said I had two lesions and they meant nothing. Said he thought I had a thyroid problem. The thyroid tests were all negative and the MS Specialist said no there were five lesions and they were likely caused by MS.

I can't believe regular neurologists have such differing opinions from MS specialists who are also neuroloigsts. Who the heck do you believe and are the MS specialist really the most qualified to make a diagnosis??

[pennstater]

Since MS specialists see many more patients with MS, and therefore more MRIs and other tests, I would tend to give their opinion more weight related to MS.


Seems strange that your GP would not have ordered tests or sent you to specialist if suspected Celiac.

Good luck. Let us know what the neuro says.

[MSW1963]

Jennagain, based on my experience, MS Specialist are required to be certified as neurologist certified as a MS specialist. That MS specialist designation came approximately 10-15yrs ago. MS Specialist are required to be certified as a neurologist specializing in MS treatment and up to date in the latest specialized MS research.

While some General Neuros may treat MS patients, because the diagnosis of MS is very complex, in my opinion the chances of an accurate MS dx should be made by a neuro with the MS specialist designation, who devote their study and treatment exclusively to MS patients for many years.

[JerryD]

Well to answer your question. A general neurologist may see a lot of other neurologic diseases and may run across a good number of MS cases. But in my personal experience, I was being treated by a general neurologist. I asked him about him about his experience with MS patients. He said that he has some other MS patients with MS. He was 'vague' about the number of MS patients that he treats. I changed doctors for an MS specialist. I asked him 'point blank' how many MS patients does he treat in his practice. He answered " over one hundred, maybe 150".
Long story short, The specialist is more focused on the disease. And has more specialized education. I would venture to say that given the choice, I would go with the MS specialist, hands down !

[CindyLWho]

So I go back to my MS Specialist on Monday to get all my test results. I am really hoping to find out if I have MS or some sort of mimic."

"MS Specialist did not buy into their theory, but ran the celiac test anyway. In two days we will know if the celiac theory was right and what the other test results are."

"I can't believe regular neurologists have such differing opinions from MS specialists who are also neuroloigsts. Who the heck do you believe and are the MS specialist really the most qualified to make a diagnosis??

In answer to your final question and based upon the above-mentioned in "quotes" by you ... my answer is "not always" and "perhaps not as often as assumed" ... my advice, keep your eyes open and keep asking questions. There is no dumb question, especially in your case ... the only dumb question is the one you don't ask.

[rdmc]

I guess it depends on the MS specialist. to make a diagnosis, probably the MS Specialist...but for regular day to day neuro issues, I've found my neuro is much better than the MS specialist was.

I waited 6 months to see the MS specialist at our local University. First visit his PA or maybe it was one of his Residents, did the neuro exam, then the MS specialist came in after looking at my MRIs and gave no more insight than I already had...I was already diagnosed. I continued with his practice for the next 2 years and never saw him during that time, just his NP. When he abruptly resigned and moved on to a job with Big Pharma, and his replacement was a young doctor from the medical school at the same University, I decided I'd just look for a neuro nearer my home because in those 2 years I saw no difference in treatment by an MS specialist.

I made some inquiries among other doctors and based on their recommendations decided to see a regular neuro, just 15 minutes from my house. He's great...runs all his new MS patients through sleep study and an evaluation at a Balance Center. (found out I had Central Sleep Apnea and now use a BiPap and also learned I had BPPV taught the Epley maneuver, so my vertigo is much more manageable.)

He's part of a large group of neuros, and if he can't figure out a symptom refers to a neuro in his practice that is more experienced in that particular neuro problem. this happened recently and I was given a completely different diagnosis of a symptom I've had for years but is getting more difficult to deal with. what I and every neuro I've ever seen assumed to be tongue spasms is atrophy, not spasm. I really appreciate his willingness to refer me to somebody else when he felt he didn't have any answers. and I'll add the MS specialist thought it was spasm too.

So according to my experience...my regular neuro far outshines the MS neuro I saw.

Please forgive any typos, I'm on my iPad

[Jennagain]

Thanks for everyone's replies. In response to Pennstater, my GP had no idea what was wrong with me. She chose to send me to the general neuro, not the MS specialist because she did not believe it was MS. It was the general neuro who then came up with the celiac theory and he told my GP who completely believed and supported what he was thinking. The MS specialist is open minded and says it may be MS or something else, but she doesn't think it's celiac. Can't wait to see who is right! I will be keep you posted.

[MSW1963]

I have to agree with rdmc, it depends on the neuro and the MS specialist. I had MS for many years before I was dx'ed, but in the early years I also had great recovery, until MS became full time, and additional 4yrs before I was dx.

Early in the dx process I had a general neuro laugh at me when I suggested ruling out MS, a few others who I detected a eye roll or two, and realized I was wasting my time and money.

A couple of years later I consulted with the 70yo MS guru at a teaching hospital, trained in Italy, chairman of the local chapter of the NMSS, who I can only conclude had some bias, thought I had a remission in my future, despite unusually high lesion load on MRIs. My MS guru explained some of the consequences of a MS dx, uninsurable, etc., unfortunately based on MRIs, even without a dx, I was already uninsurable.

My current MS doc is an extremely gifted diagnostician, participated in the first clinical trials for DMTs. But there is a bit of underlying hint of misogyny that I think comes with being an older doc. and the bias that comes with being in a male dominated profession for the first 50yrs of his medical training and MS practice.

Also a good sign when your clinical exam is an hour minimum, versus the 5 minute variety.

[msgijo]

I certainly hope that they know best. I FINALLY have an appointment with an MS specialist scheduled for next month.

I have seen a neuro that treats MS patients - NOT a specialist - since the beginning of my journey, and while he had been 'adequate' it has become more and more obvious that he really is not up to date on MS stuff. Years ago I asked him what he thought about me getting the flu shot and he asked me what I had read about it??? And he has always been reluctant to start me on anything 'new'.

About a year ago I finally got in to see him after having appointments canceled for a year . Yeah he was having some medical issues himself, but hey there are other neuros in his practice ...
Anyhow, at that visit I was sleeping 18 - 20 hours a day. I told him that and then politely mentioned that I had seen where research showed that ADD type drugs helped people with MS who had fatigue issues. He was so totally shocked! "OH NO - THAT'S A STIMULANT!!!!". I was like uh, I think I might need a stimulant about now . His solution? A sleep study. Again.

So at my last visit (earlier this year) when I tried to suggest switching to Ty or even Lemtrada (which he had not even heard about) he suggested that I might want a referral to the MS clinic. He seemed to think that they would know more about these other drugs. But yeah - that was EXACTLY what I wanted

[JerryD]

Again, I am going to advocate that you should be treated by an MS specialist if you have a confirmed dx of MS. A general neurologist can be adequate to treat MS. It is more than likely that a general neurologist does not know enough about the treatment of MS and everything that is current and up to date in the MS world. If you choose not to go with a specialist, at least you know that they exist. Good luck

[rdmc]

Again, I am going to advocate that you should be treated by an MS specialist if you have a confirmed dx of MS. A general neurologist can be adequate to treat MS. It is more than likely that a general neurologist does not know enough about the treatment of MS and everything that is current and up to date in the MS world. If you choose not to go with a specialist, at least you know that they exist. Good luck

Hey Jerry,

After reading your post, I reread mine, and I must agree there is a caveat to what I experienced, and am experiencing. I am SPMS now, so I am no longer being "treated" for MS...my symptoms are being managed.

An MS neuro is sure to be more informed about the ever increasing choice of treatment options.

But I still contend there are MS specialists who are more accessible than others. In the time I was attached to the MS specialist's practice, I never really saw the specialist after my initial visit. On the other hand, I was stable on my DMD, and my symptoms were fairly well managed, so maybe his time was reserved for those with more pressing needs.

[pennstater]

Having replied before, I actually have seen a general neuro since diagnosis, with second opinion by specialist. My general thought is that for troublesome/difficult diagnosis, MS specialist is the way to go.

But my general neuro was proactive, stayed up to date with MS research and meds. He was probably a little more conservative with new meds, preferring to wait until more data came in on usage. He consulted with MS specialists that were part of his personal peer network when needed.

So again, It can vary by doc. But if you are educating your neuro, not good sign.

Good luck.

[J-Bo]

It definitely varies from doc to doc. An MS doc failed to diagnose me, and a general neuro was the one who finally ordered the correct MRIs that determined I had MS. I've been seeing another MS specialist since, but have zero confidence in him, so am going to another MS specialist in another city. It really seems pretty random to me whether you get somebody good or not. But you know you're in trouble when an "MS specialist" tells you that pain and heat intolerance are not common MS symptoms. Yeah, he really said that.

[Mamabug]

I had a general neurologist for fie years. I really liked him, but, my MS was somewhat out of control. Since 2008, I have been seeing an MS Specialist. She really knows a lot more about MS than he did, and I'm happy for the switch.

Although it likely depends somewhat on the individuals, in general, it just makes sense to me that a specialist would be more likely to be more knowledgeable and more suited to treating MS.

[msgijo]

Well I feel a little more 'qualified' to reply to this post now. And IMHO the answer is a resounding YES - specialist are better!

I had my first visit with an actual MS Specialist at the MS Clinic in a teaching hospital yesterday and OMG - like night and day from my regular neuro appointments. The entire staff was so very helpful. They all made such an effort to put me at ease and they actually understood what I was talking about.

The doctor took up a good deal of time with me. She performed tests that I had never had done before, and actually LISTENED to what my concerns were. It seems that she had not received copies of my latest MRI's (or copies of ANY MRI's) with the notes. I am to drop my copy of the last MRI's off for her next week. She did ask about a lot of 'background' stuff that I had thought would be forwarded to her.

And although she didn't say anything negative about my current neuro she did make it sound as if his decision to finally rx Baclofin was the only thing he did that was good. She did suggest that I change how I was taking the medicine - instead of 20 mg twice a day she suggested 10mg twice a day and then a 20 mg at night.
I sensed disapproval that he didn't routinely order any blood-work (except immediately prior to an MRI), and that I only had a vit D level due to my PCP ordering it at my insistence during a visit in January . And so she drew blood for several different things - and no I don't remember what the order slips said (I don't know the codes and can't remember what the letters were).

She wasn't sure about a Depression dx, and wanted to rule out other stuff - like Thyroids. I was set up with a brief 'pych' exam (30 min) yesterday to see if a full one was warranted - it was and I am set up for that next week. I am actually kinda looking forward to that. They 'promised' that we may be able to find ways for me to actually do things and that it would help with providing information concerning my 'state of mind' re depression.
She asked where I would prefer to do Physical Therapy at - there or in my hometown. And she ordered an additional MRI to be performed prior to my next visit with her for comparison.

All in all I was very satisfied with the visit. I found out that the hospital had just received approval for Lemtrada infusions. But the ONLY thing that I wasn't happy with is that she does not at this time feel that a "heavy hitter" is called for. In her opinion I look really good considering a 20+ year dx. Lord I really hate when people tell me that