Questions about your Doc...Frustrations with mine.

[dr_boost]

So first a little background on me:

I was diagnosed with RRMS September 2010 after my first flare up. A local neuro that I was sent to made the diagnosis after the usual extensive battery of tests. At which point, I said "Ok, thanks for your help, but I'll seek a second opinion from the practice where my aunt has gone for the last 15 years for her MS.", which is rated best in the area, with 8 of the top rated 10 neuros working there. I couldn't get a quick appointment with her Dr, but could get one with a neuro that was doing her fellowship under him. So I saw her, she confirmed my diagnosis, explained everything very thoroughly to me, and gave me 2 treatment options Avonex or Copaxone, then made a second appointment a month later with me to give her my decision and just generally check in. In the meantime, she sent me for an evoked potentials test and to see a neuro-opthamologist to get a baseline on my sight. she told me that she wanted me to get that test done once a year as well as a new MRI done once a year. This all seemed pretty thorough and encouraging to me. But, before my 3rd appointment, I get a call from the neuro center saying that she has left for another hospital, and I'll need to see another Dr. They make an appointment for me to see this guy that is supposed to be the best specialist in the area, the one my aunt has seen for 15 years. I see him once, he says come back in 6 months. I see him last April. He says there's no need for an MRI until you've been on the Copaxone for at least 8 months, makes me an appointment for November. I get a letter, and it gets pushed to April. I get a letter, and it gets pushed to July. Now I get a letter and it gets pushed to November. This guy is supposed to be a foremost expert in MS, but this will be over 2 years and I haven't had any retests, MRI's, etc. Should I be worried? Should I be pissed? Should I start researching a new Neuro? Or should I just feel ashamed for being upset when I'm in a better physical state than most of the people that I see in that office while I am there?I just don't know how to feel about the whole situation.

[KristaH]

Finding the right neuro to fit you is like trying on shoes (something I love to do, especially now that I don't have the AFOs anymore) Sometimes you have to try a few pairs before you find the right one. Maybe its time to try a new neuro that will be your partner instead of pass you off.
I hope it works out!

[dr_boost]

Thanks for the words of encouragement KristaH. I guess it's time to start browsing.

[Niko]

Finding the right neuro can be tough... all the ones I see/have seen are always so nice. But generally I come out of the hospital frustrated and more anxious than when I came in. The questions I ask and the tests they perform on me result in no answers from them. They never give me concrete answers, always generalize me into categories (I give them a symptom if it doesn't fit a general consensus for MS, it must just be my imagination!?!), and it seems like the most they give are more appointments.... So try to find a neuro who can answer that he at least doesn't know the answer to your question, rather than give you silence or more pointless appointments! Besides the rant though, try seeing a nurse who specializes in MS. I've found them to be the most willing to spend time in searching for answers with me, helping me out and even just being there to lend an ear or provide a bit of comfort. Best of luck

[dr_boost]

Thanks Niko. It is frustrating. The first neuro I saw at this practice was really great. She spent alot of time explaining things to me, and had a schedule of tests that she wanted me to get annually and explained why. And that all sounded great. I figured it was pick a med out of the two options she gave me, get the tests done every year, and see her every 6 months for a while. But she moved on and the guy that's supposed to be more of an expert, just seems like he's bored to me.I'm just going to have to do some research, and try to find another doc that makes makes me feel more comfortable.

[ActiveMSers]

Maybe post a "Good Pittsburgh neuro recommendations?" thread in our Connect forum? You might get some answers. Like Krista says, it can be tricky to find the right match. But I wouldn't call it panic time yet if your symptoms have been pretty stable and you've had no worsening or relapses. Good luck!

[life well lived]

Good neurologists can be very difficult to find, and finding one who also allows you the degree of involvement you want is key. I have had 3 in the 6 years I've had MS.

I didn't feel like the first one listened to what I was saying or asking. I wrote his attending, who took over my care till he left to start an MS clinic in Texas. When he left, I asked him to recommend a neurologist who answers emails because I don't always need to be seen with every new symptom. I was lucky on my third one as well.

Of course last night I went to an MS foundation dinner which reminded me of how lucky I am. As I listened to the neuro's talk, I kept asking myself how the "expert" didn't know the most recent results or papers. It was then when I realized why I am such a pain in doctors' hindquarters. I expect them to both see patients and be current with all research on and about MY problems and treatments. As I went back over what she was saying, it would apply most of the time any way and it wouldn't scare off people from the new treatments. To the extent she was treating the fear too, her answers were probably better than what I have read. The statistician side of me just cringed.

My suggestion would be to make a list of what you want from your neuro and ask around trying to find one who can meet those needs. It may even be worth asking over the phone when you call their offices. I don't know if it's worth the trek for you, but there are some very good neurologists at Hopkins in Baltimore.

[dr_boost]

I think what really got me going was the fact that Neuro #2 was so thorough in explaining things to me, she kind of gave me a plan of what she wanted me to do and what kind of testing i should get done and how often.Then when I switched to #3, I guess I had expectations of him continuing the same sort of blueprint with maybe a few tweaks here and there. But instead, he gives off more of a "Aaah, ou don't really need to even see me until you have your next flare." type of vibe. So I'll begin my quest for a new doc and see what I can come up with. Thanks for the advice guys.