Doctor RANT!!

[Al]

This seems really goofy to me, Michelle. In the first place, you should, as I said earlier, own the information about your body. Moreover, just on a practical basis, every floor on the hospital needs to have a local printer--all the workers on the floor, including doctors, need instant access to lab results and such, without waiting for the server to cooperate. I don't understand how this works....

Al

[pberggren1]

If Batman had been there Mr. non sensitive would have quickly become Mr. sensitive.

[mishb]

If Batman had been there Mr. non sensitive would have quickly become Mr. sensitive.

Thanks Phil, I wish Batman was there

This seems really goofy to me, Michelle. In the first place, you should, as I said earlier, own the information about your body. Moreover, just on a practical basis, every floor on the hospital needs to have a local printer--all the workers on the floor, including doctors, need instant access to lab results and such, without waiting for the server to cooperate. I don't understand how this works....

Al

Some of our older teaching hospitals are still a bit out dated Al, but never fear, I will send my letter off and get the printouts. It will be interesting to see whats actually in there.

Our hospitals are always trying to save costs wherever they can and at this very moment we have nurses on strike and operating theatres closed due to the nurses strike.

[Sangye]

Michelle, that is just horrid treatment. I gather he's not your usual rheumy?

Doctors can withhold info about test results but they shouldn't. Not only is it unethical, but it can also be dangerous to you. It isn't their job to decide if you're able to "handle" bad news. It's their job to make sure you know what is going on with your body. If you can't easily get copies of your test results each time, then at each appointment tell them you want to review the results with them. ALL the results.

[Marci]

Can't sleep so thought this was as good as time as any to do my "Doctor Rant". My local ENT was so on the ball about getting me the correct dx and he thought he was sending me to the best doctor for treatment. At the time, I went to this second doctor my nasal area was the only area I was having problems so that is why my local doctor decided to send me to an ENT at the university. He actually talked directly to him and was able to get me in right away. I think this doctor "talked big" to my doctor and told him he had done research on WG, so I was pleased to be going to see him the day after I was given my dx. I was all ready for a prescription of prednisone and sone of the chemo drugs I had read about but I was surprised and pleased at the time that this doctor was taking a different approach (big mistake). This is what he had me doing. I was to put a double strength antibiotic onitment up my nose once a day for the rest of my life and come back to see him in two months. I thought "Wow" no suppresion drugs. Onitment wasn't really doing much and then the joint pain and stiffness started and from then on I knew I had a problem. When I called about this I know they thought I had the flu. Put me on a pred dose pack (pain went away right away.....for 6 days) and more oral antibioctics. Told them the pred took the pain away but he would not prescribe anymore. Finally requested an appt. but was going to have to wait almost two weeks for that. Finally couldn't stand the pain any longer and made hubby call to see if could get a script for pred and that's when they told me I needed to go back to my PCP to be reevaluated. Couldn't dump this guy fast enough. I wasted one whole month for nothing but a Large office visit bill. My PCP put me on pred and I finally got smart and listened to this forum and contacted the Cleveland Clinic. I can't believe a university doctor who read my path and surgery reports and knew I had WG would still go with the treatment plan he did. I felt sorry for my local ENT because he really thought this doctor was top notch. On paper he looked great and he certainly talked a good line. Well, I feel better now that I have my "rant" done.

[mishb]

Well done Marci.........with dumping that doctor.........and with the rant

I am so glad you contacted Cleveland Clinic.

A couple of weeks ago I saw a GP that I hadn't seen since 2009. At the time (in 2009) he looked at my blood test results and said......"I don't think you actually have Rheumatoid Arthritis"
When I saw him the other week he called me into his office straight away and said he had been reading my file.
He said that I should never have to wait in the waiting room with other sick people and should be taken in straight away.
He also just kept staring at me and shaking his head. Eventually he said, I am so sorry, I had no idea that you had Wegeners.
- I only went to see him to get my blood pressure tablets......and my normal GP wasn't in.
He appeared so sorry and so upset that I tried to make a joke of him telling me that he didn't think I had RA - all those years ago.
I said ....."I know you said that you didn't think I had RA but the least you could have done was tell me I had WG"
He did laugh, for a second, and his reply was ...."in a million years, I would never have guessed at a diagnosis of WG"

It just goes to show, there really is not enough awareness out there and they will always take a different route before the "rare one".
Luckily we do have Cleveland Clinics and Mayo Clinics and the others with WG specialists and we have all (or mostly) found someone that now knows what they are doing.

[drz]

It just goes to show, there really is not enough awareness out there and they will always take a different route before the "rare one".
Luckily we do have Cleveland Clinics and Mayo Clinics and the others with WG specialists and we have all (or mostly) found someone that now knows what they are doing.

How many others on here have been using Dr Ulrich Specks at Mayo? I was disappointed recently when I called in about getting my regular follow up appointment to learn that he has taken on some different duties and apparently has few openings now to see old Weggie patients. I really liked seeing him and now have some anxiety as I wonder who will be seeing those of us enrolled in their follow up research study on long term treatment of Wegs. Change is tough anytime when you finally find a doctor you like and trust, but for us Weggies it can also be rather precarious.

[Psyborg]

That really stinks. Does he have any suggested protégés.

[Dirty Don]

I'm in a similar postion drz as my rheumy is retiring...sighs...she is the first person who I've trusted with this disease. I'll miss her guidance. But, as she pointed out, Mayo is already searching for her replacement. In my case, I still retain my pulmy who is very knowledgeable and experienced with AIs, and a PA and NP will take over my monitoring until a replacement is hired, and there is another rheumy on staff who's main interests are vasculitis and WG diseases. It is disconcerting - I've already chatted with my rheumy about it...she says not to worry...Mayo is responsible and thorough and will replace her with someone who knows the disease...hopefully...note the hesitation...sighs again. We'll be fine drz...just breathe a little deeper! LOL!

[Pete]

They can't have Dr Villa Forte from Cleveland Clinic. Several of us want to keep her!!!