MS specialist vs. regular neurologist

[VikingKitty]

hello,

Can anyone shed light on the benefits of seeing a MS specialist vs. a regular neurologist?

The reason why I'm asking is because my regular neuro recommended me to the local MS clinic because it's a "one stop shop" of neuo specialists, IV infusion center, urologists, etc.

However, I am very frustrated with the lack of service I'm receiving so far. It took 2 weeks of "phone tag" just to get an appointment scheduled for Jan 2014 to see a neuropthamologist. I called back and left a voice mail because I had some questions and never received a return call - that was 2 weeks ago.

I called again today to get a hold of the secretary there and was put on hold for 10 min at which point I hung up. I don't think you should be put on hold for 10+ min to get one question answered. And my question for her was "What if I have an acute flare that needs treated w/steriods?" Being that I can't get through, what good is it in an emergency? I don't want to have to go through the ER like I did a few months ago and have a hospital stay if I can get an outpatient infusion. But if I can never get a hold of them, what good is it? Can't a regular neuro do just as good? There is a neuro (not my current neuro) that I contacted and someone is always available at the phone to answer questions.

So anyway, after all my long-winded explanation, is there really a benefit to seeing a so-called MS specialist?

And if you happen to live in the Pittsburgh area, yes, I'm referring to Pitt's department of Neurology (MS clinic)

thanks in advance for any advice.

[Marco]

The regular neurologist that I saw had seen 5 MS patients in 12 years or something like that. The regular neurologist was always prompt, courteous and unrushed and the secretary was often bored waiting for someone to call.

I saw a local MS specialist that has over 5000+ patients fighting the same disease. He has a research clinic, therapy center and many tools readily available to him. It took over 3 months to get into him. The office "lost my medical records" and the nurse was argumentative with both me and my wife. Phone wait times could easily reach 30 minutes and follow up appointments were typically several weeks later for establish patients. I was told that in an emergency waits could be less, but never found out of that were true.

I see a MS specialist that has over 5000+ patients fighting the same disease. She has a research clinic, infusion center, fitness center, counselor, MS support group, MRI and more tools readily available to her. I've had a MRI at 11 am, gone to lunch and came back for a 2 pm appointment with MRI results in hand. When I call the schedulers are always pleasant and helpful. When push comes to shove I can get an appointment within 48 hours. If I leave a message for the nurse I normally get a call back within 8 business hours. The center has a few other neurologists available and they rotate on-call/after hours duties so someone can be reached 24/7. In a pinch I have my neurologists personal email address and she's been known to respond to emails even while overseas on vacations.

Pretty easy to decide which doctor to see. There are 50 neurologists within 10 miles of me, but we drive 100 miles each way to see our neurologist. It's a real pain, but the minutes we spend with her are worth each mile we travel.

I completely understand being frustrated by your experience. In your situation, I would keep the January 2014 appointment since neuroopthamologists tend to be backed up. Being established in both places isn't a bad option, and established patients tend to get in quicker than new patients.

I would ask the doctor when you see them your question about flare ups or acute situations. After they respond you can relay your experience. Doctors cannot fix problems if they are not aware of them. I know at my neurologist they recently had some "involuntary turnover" that has led to better patient care. This was only possible because patients expressed their concerns to the neurologist.

Sorry for my long-winded response. I wonder if you may have other options in Pittsburgh between the two situations you described. You can call the MS Society for a list of MS specialists in your area. I took the list they send me and and visited their websites and then called good potentials. I immediately knew I would not even visit some of the offices based on my initial call. I visited the remaining doctors and made the best choice for my needs.

I would simply encourage you to add a little bit more frustration to your life in finding the absolute best situation for your healthcare.

I just wish all doctors were perfect like us patients...

[tired_teacher]

Different Docs

Yea, I too are going through this. In the fall, I was hospitalized for over a week due to MS pain and messed up vertebra. I went to my PCP who called my MS doc to get instructions on the best way to treat me. I love my PCP don't misunderstand.

So in the spring, I found a neuro closer to me. My MS doc is four hours away. The new neuro became familiar with my case, but (this is funny), she said, "I cannot believe you are taking these meds, and you must, do a follow up with your reg MS doc every three months before I will see you."

I agreed only because she is a neuro, and I would rather be hospitalized by a neuro for MS in a facility with more neuros than in a facility with NO neuros--in case of an emergency.

I truly understand. Good docs are hard to find, but I've found keeping a health journal and taking it to your doctor builds an unforgettable relationship with all of them. This journal is so interchangeable and keeps everyone on the same page.

I hate sitting down in a new clinic and hearing, "When did your symptoms start, what were they, and are you being treated." Oh--here is the best one-- "Do you understand MS?" I've learned MORE about MS here at MS World than I have anywhere else.

The only reason I chose a reg neuro was because of distance.

Love and prayers to you all --Melissa

[aspen]

The first appointment is a long wait ... once you are a patient you will have access more quickly.

[SNOOPY]

Can't a regular neuro do just as good?

Yes.

I have never seen an "MS specialist" although the offer has been made by 2 different neurologists, if I so choose.

My neuro, although not a "specialist" has many, many years experience with MS patients. He had a professor who wrote one of the first books published on MS many years ago.

In my opinion, the choice of Doctor should be based on who you feel comfortable with and the level of care you are receiving.

[Cat Mom]

My regular neuro is mainly a stroke specialist but here, you can't switch drs. I don't have any issue with this as he is a thorough doc and is so pleasant (plus, at 48, I'm always the youngest patient in the waiting room... lol).

When first dx, he sent me to a world-renound MS clinic to make sure he didn't miss anything. The doc I saw there was a total JERK, not just with me but berated his secretary in front of the full waiting room. I was embarrassed for her.

I'm soooooooooo glad to not have to go back to him. I've seen his name attached to tons of literature, he obviously knows his stuff, but zero bedside manner. He actually KICKED MY CANE and asked, "What's this for?" and looked at me strangely when I said it was for balance. To get to this appt, I had to take a bus, then the GO Train, then subway, then a 20 minute walk... then do it all again to get home. Probably a 2 hour trip, one way!

Also, between making the appt and attending it (months), I got married and changed my last name. That was another form of bs!

The next time I saw my GP, she had a copy of my appt and noticed the doc's name. She asked how I liked him, I lied of course, good thing as her son and his son grew up together, even went to the same university.

I hope my experience is a "one-off" and other MS Specialists are better with patients. I'm so happy to see my regular neuro.

[VikingKitty]

He actually KICKED MY CANE and asked, "What's this for?" and looked at me strangely when I said it was for balance.

Cat Mom-

There is definitely something wrong with an MS doc that doesn't know what a cane is for

[misslux]

My regular neuro is mainly a stroke specialist but here, you can't switch drs.

Yes, you can!

http://www.health.gov.on.ca/en/ms/he...lic/faq.aspx#1

[misslux]

Also Cat Mom, I'm sorry about your experience. I'm guessing at St. Mike's? My neuro there is excellent so I feel fortunate to have her.

[aspen]

Catmom, I'm pretty sure I saw the same ms specialist ;-). And I did a similar trip to get there, and WISHED I'd had a cane. During my time there though, it was the receptionist in the background rolling her eyes at the disorganized neuro ...

You can definitely see another neurologist -- my family doctor referred me to 3 ms clinics, and although after the first experience I didn't want to continue, I was convinced to go to the second -- this ms specialist is wonderful! (I drove a different direction this time )

[KatieAgain]

Cat Mom-

There is definitely something wrong with an MS doc that doesn't know what a cane is for

Any MS doctor or any doctor that kicks my walking stick will quickly find out I can kick too! It would be worth my night or two in jail.

Unbelievable.

As far as MS Center vs. regular neuro...it depends on the person. Initially I would recommend an MS Center...I have to be with an MS Center. Mine works with my local PCP if an emergency would happen. I know now, that I will never be able to be with just a general neuro. You really have to look at the course of your disease.

[Toomnyhats]

I say an MS specialist for a 2nd opinion of dx, but after that it's who you are most comfortable with.

I was dx by a general neuro, did not care for her bedside manner at all. Dx confirmed by specialist at teaching hospital/MS clinic. I chose to stay w/specialist in the clinic for access to the latest information.

It is a longer drive for me, but I've had good luck getting in quickly (to the PA) if needed & I have email access to his PA.

[Beccah0206]

Neuro vs MS specialist

After muddling through limoboland a few years with a probable MS DX, primarily ignoring the symptoms as they were more annoying than anything, the PA I see at my pain clinic insisted I see an MS specialist at UC in Cincinnati.

I made that appointment with Dr. Melanson for August (a 4 month wait) then got the call she had left UC in June, telling me I needed to reschedule. I made that appt with a Dr. Colapietro, also a UC doctor.

I was somewhat alarmed to learn while researching that though she's not a new doctor, she's a new neurologist. However, I was in the throes on my second exacerbation of the year and decided to go with it becaus the symptoms this year have been much more debilitating and have made working, and life, difficult.

I'm glad I did because she's very nice and very thorough. Her assessment in her office was thorough and she ordered a battery of tests. I've already had 11 tubes of blood drawn checking about 18 things and am preparing to spend 2 hours in a 3T MRI. She will decide on further tests if need be.

She is having me see the new MS specialist they've hired and will continue to follow me as well. No matter what she finds, I just need the symptoms managed enough to work and take care of responsibilities at home. Fortunately, my kids are grown.

Good luck in your endeavors. It's quite frustrating I know. She is my 3 rd neuro.

[KyleW]

MS specialist are like anything in life, there are good ones and bad ones. The first one I saw was a nightmare. Waited 3 hours for 20 minutes of his time. During the 20 minutes I was with him he left the exam room 3 times!

MS specialist #2 is a gift from God! He runs a full featured MS Center; infusion suite, MRI suite with 2 3T machines, naturopathic doc, social services etc., etc. His prime directive is that the patient comes first. I've never waited for more than 5 minutes for any type of appointment at the center.

The advantage to seeing a specialist is that MS is all they deal with.

Kyle