MS neuro leaving... advice please!

[andi b]

I have been seeing the same MS neurologist since my diagnosis in 2010. It is a 1 1/2 hour drive from my location out in the rural Olympic Peninsula to Seattle.

I sent her a message that I had gotten my quarterly lab work done (on Avonex) and she should check it and let me know if okay. She said she would but also notified me that she will be leaving in May to move to Atlanta and suggested I go to another Swedish med group neuro in a different (less convenient) location in Seattle. She didn't give me any names or suggestions.

I am wondering 2 things: Since I have had very little progression (if any) in 4 years, whether an MS neurologist is necessary or whether I could see a general neurologist closer to home (we have a couple of Swedish neurologists on the Peninsula).

The other part of this question relates to Medicare and the expense of Avonex. I am thinking of going off of Avonex in October when I start Medicare (because the expense of the drug is not something I can afford without copay assistance, and because after 5 years on it, I have had no progression). I have heard that after 5 years they sometimes take you off the medication if there is no progression... so would a general neurologist be able to decide this in comparison to an MS neuro?

I'm at a loss here...

[fairpace]

I think you should do both! I think you should sleuth around in your area for a general neuro. Meet with them and see how you feel about their knowledge or approach to MS, this will get you registered as a patient in case they're good and workable, much more convenient. Then, if you don't like them, no harm no foul. However, if you need someone in a pinch, they're much closer.

At the same time, start looking for another MS specialist in Seattle. If Swedish doesn't have anyone convenient, what about Virginia Mason? If you only see them once a year, and maybe coordinate the ancillary stuff with a general neuro, then a commute might be worth it?

I don't know what to say regarding Medicare. However, regardless of 5 good years, I would try to stay on a DMT if you can afford it somehow. Avonex may be one of the reasons for keeping things at bay. I've never heard of a provider taking someone off of a DMT for having 5 good years. Usually, they take you off when you reach SPMS, even then sometimes they'll try to keep you on.

Good luck with your transition!

[Kimba22]

Hi Andi,

I never heard of "Swedish" neurologists before your post. Learn something new everyday! . Sorry to hear about your neurologist leaving. Finding and then building a relationship with a neurologist you are happy with is so important. I loved the neurologist who diagnosed me (a general neuro who treated MS). She was very informed and up-to-date about MS and treatments. Definitely helped she'd completed her neurology fellowship with a MS Specialist! But, she also moved. Then it took me years to find another neuro who I trusted and felt comfortable with.

There are some general neuros who are very knowledgeable about MS. Considering you are doing so well, I think it's reasonable to check out a general neuro closer to home. If your MS was not stable, and with all the treatment options available (along with new ones sure to be on the horizon), I'd recommend you look for a MS Specialist.

And as fairpace mentioned, you can always look for another neuro if you aren't happy with them. And it might not be such a bad idea to look for a MS specialist, but you may not need one. At one time, I saw both an MS Specialist and a general neuro. The general neuro I saw was on board with my MS Specialist's treatment plans, and it was helpful to be a patient of a general neuro on staff whenever I ended up in my local hospital. You might also find this link helpful when looking for another provider: http://www.nationalmssociety.org/Tre...ers-in-MS-Care You can also ask a MS navigator for other suggestions: http://www.nationalmssociety.org/Res...n-MS-Navigator

I'm glad to hear you've been doing so well since your diagnosis. But, I also never heard of being taken off a Disease Modifying Therapy just because you had little progression (or disease activity) ... for any length of time. Unfortunately, there no way to know if it's because of the Avonex, or it's just the natural course of your disease. That can also change at any time.

But, I can also appreciate your concerns about cost once you go on Medicare. You might still be able to get assistance by calling Biogen. http://www.mymsaa.org/about-ms/sources/ Hopefully, you can find a way to stay on your on medication.

Best of luck ,

[Jules A]

Since I go to a large teaching hospital I have been through 4 MS specialists over the course of my MS and have liked all of them. Imo, it is nice to have a specialist lay eyes on you every year or so but I think in most cases there isn't much they can actually do should things start going south so I'm not sure I would kill myself to get to see them. Perhaps every two years and see the more convenient neuro at other times?

As for the Avonex my argument would be that you haven't had any relapses or progression since being on it because it is, or might be, working! Of course we will never know for certain if it is the medication, your natural disease progression or a combination of the the two but there is no way I'd risk upsetting the apple cart if I were you. If we were talking about high blood pressure or diabetes there is no way we'd consider stopping insulin or antihypertensives because our disease was being managed effectively, right?

Best wishes with whatever you decide.

[andi b]

probably going with local neuro

Oh, Kimba, sorry I was unclear. Not a "Swedish" neurologist, but a neuro from Swedish Hospital, a big entity in Seattle and around the region (which our local hospital has a contract with).

I did get a message back from my current neuro at Swedish, who agreed that with my current non-progression that it would be okay to go with one of the neuros here in Port Angeles (in fact she mentioned that one of them was "great" to work with). So I'll go that route.

I'm not due for an appointment until September, at which time I'll need an MRI. So it's early days yet... I'll be contacting the neuro office here to find out if I need a referral from my current doc and what the waiting period is for an appointment.

I would really like to stay on Avonex if possible but the cost under Medicare will be prohibitive; I am currently on a copay assistance program ($ 0 copay) but that is specifically if I am not on Medicare. When I renewed the copay assistance program in January, I did ask if they had a copay program for Medicare and got sort of a nebulous reply. Guess I'll wait and see what happens closer to the time when I actually apply for MCR.

Thanks for your responses.