Question about MS Specialists

[rdmc]

I've finally decided to see an MS specialist. I was with a neuro I really liked for many years (very well informed about MS because she had done her residency at an MS facility), but she retired due to illness. New neuro is fine, nice person, but this weekend I had a problem and she wasn't on call, had a message, but no one to call (strike #1)...so I had to put a call into my GP for some muscle relaxers because my shoulder was in such a bad spasm. The GP only gave me a few and told me to call the neuro on Monday.

Did that, they wanted to start IV Solumedrol which I'm allergic to and can't figure out why they don't see that in my chart when I call (strike #2)...then they wouldn't Rx anything but the advice was go see the physiatrist and have my pump turned up. (strike #3)

That's when the light bulb went off and I realized I needed a neuro that was a little more familiar with a pump and MS (Baclofen pump with catheter at T-9 will not do anything for a shoulder spasm.) I did call the physiatrist's office, they confirmed this and were kind enough to phone in some muscle relaxers.

So I called the closest university with a MS center, and got an appt. with their MS specialist...February 23, 2012. That's fine, I took it because there isn't really any hurry to be seen by him, I just want someone with more expertise on MS, but my question is, do you normally have to wait that long for an appt. with an MS specialist at an MS center?

[cosake]

I didn't have to wait very long. I called and was seen as a new patient at Dartmouth Hitchcock's MS Clinic for a second opinion within 3 weeks. After the second opinion I stayed with them for all of my MS care and love the facility and the doctors and nurses.

You may want to consider the fact that if it takes this long to get in to see the specialist, you may have problems talking to or getting in to see them when you are having a problem. Maybe ask for references from other patients, or ask how long it takes to be seen / get a response when there is a problem.

Good luck - I hope this works out for you.

[Toomnyhats]

I only had to wait 2-3 wks for my appt and that was with the head of the MS clinic. If I'm having a problem I can get in sooner than that.

I agree with cosake, this does not bode well for future appointments. Try to get some references. Did you check with NMSS for recommendations in your area? They may have more info on this doc.

[rdmc]

He's highly recommended by members that use this MS center (many on this board), it's affiliated with a state U, and he's supposed to be the "best." He gets wonderful reviews, I guess there just aren't enough MS specialists in our area. This is about an hour from our home. I notice this practice has a nurse practitioner, and I imagine once you get established as a patient, then most concerns are probably dealt with by the nurse practitioner.

[sherylp]

I recently relocated and found an MS Specialist. The appointment for new patients was two months out which was fine for my situation. If they can not give you a closer date; I recommend contacting your GP to see if their office will contact the specialist for a closer appointment. Stress to your GP your symptoms and the response you have received from your current neuro. This USUALLY always works.

[cosake]

It does sound like you have done your homeworkon this specialist.

I have seen a NP at the DHMC MS Clinic and really liked her. I did see her more than my official neuro but I was OK with that. She always consulted with my neuro when she needed to and they were very responsive. If you can get in to the NP when you need to and you are OK with that, it should work for you.

[Spydre]

I guess I was lucky - when I got the paperwork sent through, I only had to wait a few weeks to get my appointment with my MS specialist - which is one of the top neurology centers in the country. I guess it was because it was at the resident clinic (for people with Medicaid) rather than the office that takes other insurance? But now that I have Medicare and Medicaid, I can actually see her at either office.

[lemstar]

It does take that long to get an appointment as a new patient. If you feel you NEED to see the doc sooner, call and explain your situation. I have seen both Cascione and Krolczyk, and think very very highly of both of them. I will be seeing Cascione this week. I think it is well worth it to have a specialist on board. When problems arise, they do respond.

[KyleW]

From what I've been reading I consider my self lucky. It will be 5 weeks from initial PCP visit to MS Specialist appointment. During that 5 weeks I have had head and spine MRI's, been seen by a non-MS Neurologist and tonight I start IV Solumedrol.

[BeneathTheLies]

My first neuro appt was with an MS specialist. I got very lucky on that one. They said it would be 3 months out before i could get in. I basically told them i couldn't feel my legs and if they couldn't see me sooner i would find someone else that could. They called back the next day with an appt for the next week. I think sometimes you have to be somewhat aggressive to get a response, but that also might be area i live in too.

When i scheduled my appt to see a neuro at Johns Hopkins it was about 2 months till i could get it. It wasn't a problem at that point b/c my neuro had already given the dx and i was in the process of starting Copaxone. I wasn't all that worried but for a normal check-up i see my neuro at the moment every 3 months. They're pretty good about calls too, the longest i had to wait was a day for an answer.

All in all, if you feel it is worth it go for it. I would be going to the MS center at Hopkins if it wasn't an hour and a half drive one way. I can't sit in a car that long anymore.

Good luck,
Heather