why am I nervous?

[uli1515]

My Neuro just isn't working for me. So I called ohsu the big time Ms clinic for Oregon. But here's the catch. I have to be referred from my Neuro.

I am dreading the talk. I don't know why I am so much but I am. Is there a way for a wuss like me to avoid this talk. I feel if I do this he won't fill my scripts of tecfidera and gabopentin. Would he do this? can he ?

My Neuro has so many strikes against him I can't keep dealing with him. The condescending attitude from day one should of had me running.

I hate Ms..

[MSW1963]

That's a coincidence. I'm considering them as well. I've contacted them in the past, but even the 'reception' over the phone has a certain 'reticence'? reluctance? like I didn't get the unvitation. That alone is sooo off putting.

I think my current MS neuro and I have mutually 'terminated' after 10yrs. He's a good MS specialist, but he's of a certain generation that tend to be dismissive, but difficult to detect, although the 'amour chracks' from time to time. . He comes across female/patient friendly, but the last time I felt dismissed, it resulted in a significant MS event, but more importantly I embarrassed him in the presence of a new hire colleague.

Curious about your current MS neuro? No pressure if you'd rather not disclose. I totally understand having to fire your current MS doc. although mine has renewed my rx's, the least he can do under the circumstances.

[hunterd]

it is only natural to be nervous in this situation. Can you get a referral from a different doctor? If not, I do not think you can avoid this talk. How soon from when your doctor gives you the referral to when you get an appointment? There may be no lost time between when your prescription run out and when you can get an appointment.

[uli1515]

Well without sounding whiny. Here are my issues.

I've had serious constipation. To the point of ER and chugging lactose. I've said this to him over 5 times. He tells me it's not a big deal. Obviously it is to me.

His manners and attitude towards me is so indifferent. I doubt he would even care if any of his patients came back.

I've had back pain that I had to make a small issue in the hall way because he kept changing the subject on me. But when his colleagues were in ear shot he changes and prescribed me gabapentin that has worked wonders.

Also I have been early to every appt. He has been 45 60 and 30 minutes late to even pull me back in. Then I wait another 30 minutes to see him walk through the next door. All of our face time has been under 15 minutes where he talks to me about what I'm going through even though it is all generalities.

He pushed Tec on me even though I was hesitant with the side effects. I'm pretty sure he must be getting a kick back. Basically was a spokesman for them.

I'll pm you his name I would like to keep that out of this public view.

Rant over. Sorry friends.

[Thinkimjob]

They (neuros) are generally cool with it. As specialties go, MS is one where people may well ask for second, third and fourth opinions.

[sulphur kennel]

Next time bill him for your time!

Also I have been early to every appt. He has been 45 60 and 30 minutes late to even pull me back in. Then I wait another 30 minutes to see him walk through the next door. All of our face time has been under 15 minutes where he talks to me about what I'm going through even though it is all generalities.

I have handed a pre-printed bill to one of my doctors that was habitually late. I really liked this doctor and didn't want to change to another. Seems his support staff were over-booking his appointments. After he payed bill and made some staff changes, I have never waited more than 15 minutes since.

I printed up a bill that listed the time of my appointment, time I had to wait in each setting (I put a space here to write in the # of minutes), the rate I was charging ($35 per hour or the same amount as my co-pay) and the terms I would accept as payment (cash only).

I have a friend that has some major health problems and works herself into a frazzled bundle of nerves before she has to go to a specific doctor, because this dr. tries to blame drinking she did in her twenties on all her health problems she is having now. She has no liver problems. I want to know how 20 years after giving up drinking it can cause you to dislocate and fracture a foot so severely that it ends up in the shape of an 'L'? This dr kept telling her that "When the swelling goes down it would be easily worked back to where it should be." After 3 surgeries, 2 years confined to a wheel chair, losing a toe, and a job, she might be able to keep her foot but it will never be very functional and she may need to use crutches or a walker for life. I have seen my once vibrant, active, happy friend become depressed, her spirit broken, and almost an invalid.

I said all that to impress how important it is to have confidence in your doctor. It does feel good to fire a bad one. I had to fire my 1st neuro. I did it after threatening his staff and him too with my cane for not returning a single call in a one week peroid that caused me to go into a bad flare.

I am sorry you have to face this. Hope this helps.
KC

[pennstater]

It is a difficult conversation to have without putting some doctors on the defensive. Just like all the people we meet in life, depends on the personality.

If you want to be direct, you can tell him that while he feels your symptoms are not a problem, you are worried about them and they interfere with your life, so you want to get a second opinion and either put your fears to rest and/or address the problem, if one exists. This should save his ego, as you are acknowledging he could be right.

If he tries to prevent or all of a sudden becomes empathetic to you, say you appreciate it, but would still like the referral.

Good luck.

[MSW1963]

uli1515, my current MS doc is very thorough during office visits, clinical exams, etc., ov's lasting an hour. It makes changing docs, for an unknown quantity, all the more nerve racking.

When I relocated to PDX, OHSU seemed to be 'the' place to go for MS. I initially needed a referral from a local doc, which left me consulting with a general neuro with a specialty in stroke disorders, so of course he reversed my MS dx, based on 5yrs of MRIs and reports that all stated MS from a university hospital, on copaxone 5yrs. I knew where things were headed, and I was not going there again.

When I contacted OHSU, my call repeatedly went directly to voice mail that was full and not accepting new messages. Several days later, someone eventually contacted me, with a snarky comment 'you have called us 5 times'. At that point I was not only not interested, I have avoided them until my recent issues with current MS doc. I do not ever make a nuisance of myself, I can count on one hand the number of times I've called my docs office with anything more than routine rx refill, etc.

I called OHSU within the past 2wks, and hit the brick wall 'release of medical records' from my current MS doc. Frustrating and intimidating medical professionals? to deal with based on my experience. The neurology dept has 1 MS specialist based on the website, makes them that much less appealing.

I hope you have much better luck.

[Mable]

I look at it this way. Before I knew I had MS, I was the kind of person who planned to stay healthy forever. I would never get diabetes because I could never give myself shots. I would never get in an MRI machine because I'm anxious and claustrophobic...besides, all those magnetic waves can't be good for you.

But I figured out pretty quickly that any MSer who wants to take care of herself has to be braver than other people. So I get in the machine; I give myself shots; I take more meds than I want to take; I let them take blood. That's the bottom line, Uli. We have to be brave or we lose out.

You want to take care of yourself? Call his office and say you want a recommend for OHSU because you want to hear other perspectives on your case. You don't have to say any more than that. Everybody is entitled to second opinions. You can do this.

Oh, let me add that I did what you did. I asked my neuro for a recommend to OHSU (and he seemed mildly hurt by it. He thought I was making a statement about him being a new, young guy--but I wasn't. I just wanted to move to Oregon for a while to be closer to family). OHSU confirmed that they would have made all the same recommendations my neuro had made. His office, and my state, is a lot less crowded, so I went back to him--more confident that I'm getting excellent care.

[MSW1963]

Mable, is the OHSU website accurate regarding one MS specialist on staff?

[Mable]

MSW, Check out OHSU Multiple Sclerosis Center. I saw both Meg Whitman and Rebecca Spain while I was there. I've seen Bourdette and Yakov in various conference videos talking about their research. And I have friends who see Mass. They're all very into MS. Maybe the web site is basing that statement on some specialized criteria. But they all have decades of experience with the disease.

[JerryD]

I guess that I haven't followed this thread very well. I thought that I read OHSU had only one MS specialist. Then, I read a post that named 5 neurologists that are affiliated with the hospital's MS clinic. What's the truth? I have always read that OHSU is the 'tops' in MS in the northwest states.

[Mable]

I don't want to post links, but google OHSU MS Center. There are many seasoned MS neuros on the staff.

Swedish Medical Center in Seattle ranks pretty high too for northwestern MS care.

[MSW1963]

jerryD, if I'm understanding the fine line between 'interest in' versus 'Multiple Sclerosis Clinical Fellowship Program' it does seem DR. Spain is the only certified? MS specialist at OHSU MS Center.

[AriD]

I completely understand feeling uncomfortable in your situation uli1515. I have posted the same kind of thing. Because of insurance reasons I switched my neurologist to someone very well known for MS care in my area. However older and not what she used to be. I was shocked at my first couple of appointments at how disorganized and unhelpful she was. Just more and more meds piled on. And I have other neurological concerns with an aneurysm that she keeps forgetting about.
I have wanted to change doctors for almost two years now. Problem is it is uncomfortable for me to do this. I work at the hospital where my neurologist is now. There are others I know would be good but they are in the same office. It would be weird sitting in the waiting room for someone else. They all know me from my job as RN in SICU.
I loved my last neurologist and would love to return to her. Problem is she belongs to tier 3 insurance so co pays would be high. If I was hospitalized it would have to be at my hospital which is fine but I'd be in the same awkward situation having my current neurologist around
Part of me feels as things deteriorate for me does it really matter who I see. So discouraging
Of course my advice to you is that you need to do what's best for you and your health. Once you have that conversation with your neurologist you can move forward and it'll be in the past. I'm sure he/she has had this happen before. As an RN I have seen many people switch doctors. Each of us are individuals who link better with certain personalities. Doctors understand that. Now if I could only heed my own advice!
Good luck