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View Full Version : What are reasonable expectations from doctors?



LilyPony
03-05-2011, 04:16 AM
I found out this morning that my local rheum had not done anything to get me an appointment at JH that was supposed to be started working on a month ago. My request for guidance on my returning sinus pain and increased nose bleeding was answered 2 days later (this morning) with instructions to go to my general doctor or find an ENT to check on it. I was supposed to have a follow up appointment 2 weeks ago and they're "trying to find" an appointment for me. At that clinic, if you arrive 15 minutes late you are rescheduled, but wait hours to be seen. My primary care doctor years ago said that's how it is with rheums, too many patients and not enough hours in the day.

Is this typical? What is reasonable to expect from a rheum? If it were my primary doctor, I would have fired him already!

NicShaf
03-05-2011, 04:54 AM
My Rheumy is extremely busy, but he always takes the time to make sure he has gone over everything with me. You have a rare disease that deserves a little extra attention in my option. 2 weeks seems ridiculous to "try and find" an appointment, so much can happen and change in 2 weeks. I don't think your expectations are unreasonable at all.

freakyschizogirl
03-05-2011, 05:11 AM
I have the same problems with my expectations of what my Rheumy should be doing, his attitude and how often he schedules my appointments. I thought it must be me having unrealistic expectations of him. But then again dont we deserve the best care possible? If you're not getting it from him look elsewhere.

Hammy8241
03-05-2011, 09:00 AM
Get rid of and find another - we have enough to deal with without unsympathetic/uninterested/uneducated (delete as required!) demi gods . Find one that cares and knows WG, they are out there. Good luck

freakyschizogirl
03-05-2011, 09:14 AM
Get rid of and find another - we have enough to deal with without unsympathetic/uninterested/uneducated (delete as required!) demi gods . Find one that cares and knows WG, they are out there. Good luck

Demi gods...what an awesome way of putting it!

Sangye
03-05-2011, 02:04 PM
I agree with Hammy... fire him. Wegs doesn't wait.

drz
03-05-2011, 04:39 PM
Is there another doctor to help you, your nephrologist, internist, GP, pulmonary doctor etc. ? Some times we can't wait around till they make time for you.

Ask medical records for copies of your records and contact them directly. Most people who come to Mayo are self referred according to their web site so this might work for other big hospitals too.

jola57
03-05-2011, 05:23 PM
I agree, you have enough to think about without being troubled by an unsympathetic doctor. Is he the only rheumy available to you?

freakyschizogirl
03-05-2011, 10:29 PM
I wouldnt have been referred to Addenbrooks if i hadnt persisted in asking for it. And my Rheumy still doesnt know i've been!

Jack
03-05-2011, 10:59 PM
Sam - you have come on a long way in the past 6 months. Your new attitude is going to help you a lot. :thumbup:

Sangye
03-06-2011, 01:15 AM
I agree with Jack! You go, girl. :thumbsup:

JanW
03-06-2011, 03:44 AM
I am in NYC, but my rheumy will see me next day if there is any problem, and I've never had to wait more than 10 minutes past the appointment time. Appointments are usually 30 minutes or 45 minutes. He is part of the largest rheumy practice in the city (hospital based), so, for one thing, these guys are not also trying to 'run a business' and pack four patients in to an hour. All bloodwork is done on site. On the day that I first saw my rheumy, he told me to call my ENT who is an expert in this area. When they asked why I wanted the initial appointment, I told them suspicion of wegs and I had an appointment for the following day.

I find that these guys reserve certain blocks of time every day for new/emergency appointments, which allows the whole practice to function more efficiently. Mind you, they are also the people who are doing research and writing papers on these conditions, so it is in their best interest to "gather" as many of these patients as well, very different from the guy who is using RA to keep him in business.

freakyschizogirl
03-06-2011, 03:49 AM
Sam - you have come on a long way in the past 6 months. Your new attitude is going to help you a lot. :thumbup:

Cheers Jack and Sangye and everyone else on the forum, couldnt have done it without ya! :hug1::hug3:

Sangye
03-06-2011, 04:19 AM
We've all been in the same boat. Or maybe "overboard" is a better analogy! Thanks for letting us help you!

vdub
03-06-2011, 05:52 AM
My rheumy was pretty disconnected as well and I will probably send him down the road. He told me a couple times that he wasn't sure I even had WG and I think that biased his treatment, which was not very aggressive. My endo and PCP are absolutely terrific.

My PCP is the one who sent me to Salt Lake City. The rheumy in SLC is beyond fantastic.

The final diagnosis came back from the rheumy at SLC and I do indeed have WG. My lungs have minor scarring and my upper sinuses have moderate damage. The biggest issue has been the brain, but so far there is no indication of any additional granulomas beyond the one that destroyed my pituitary.

The first thing the SLC rheumy did was nearly double my mtx and get me on a schedule of blood tests every two weeks.

I'm not sure I will even stick with my original rheumy. It's a long way to run to Salt Lake City, but the level of care is sooooo much better.

freakyschizogirl
03-06-2011, 06:53 AM
My rheumy was pretty disconnected as well and I will probably send him down the road. He told me a couple times that he wasn't sure I even had WG and I think that biased his treatment, which was not very aggressive.


Sounds very familiar vdub. Good luck with getting the best doctors and the best treatment. :thumbsup:

Oh i'm definately overboard Sangye!