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I'm So Mad! Doctor Switcharoo


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#1 ErinF

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Posted 05 April 2007 - 01:42 PM

So my general practitioner tentatively diagnoses me with diffuse scleroderma, and calls up to to get me into see a known slcero expert. I got a call a couple of weeks later saying the expert has accepted me as a patient and we set up the appt. for April 9th. Today I receive some info in the mail from the Health Service listing my "provider" as another doctor, not the expert!

I call and find out that this doctor is a resident. I DON'T WANT A RESIDENT. The whole purpose of me going up there was to see the expert. I was really starting to feel good that I was finally going to get some answers and now I feel like that won't happen because this will wind up being a "preliminary" meeting, one that will simply require the resident to report back to the expert and then I'll eventually hear something. Why would they call me and tell me that the expert would see me on the 9th, but then that's not who it is???? I really wanted to see someone who has seen lots of cases of sclero and is experienced with it. I'm so mad!!!! Should I call back tomorrow and say that I was told I was going to see the doctor and that that's who I want to see? Maybe my general practitioner could call up there and reiterate that she wanted me in to see an expert ASAP.

ErinF

#2 Gi Gi

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Posted 05 April 2007 - 02:54 PM

Oh Erin how frustrating!! :o

If it were me, YES I would call them back and demand that you see the doctor you want. You are paying for this, it's YOUR health, you should see who YOU want to see. Maybe things are different where you are, but that kind of thing wouldn't fly here.

Keep us posted.
Your Friend,

Gi Gi

#3 Shelley Ensz

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Posted 05 April 2007 - 03:41 PM

Hi Erin,

My husband sees a top expert, who is also a professor, for his lung condition, and he always has an appointment with a resident first. Then the resident consults with the expert, and then they both come in together for the final half of the appointment. And some of the residents he's seen have been absolutely fabulous, and they are on their very best behavior, trying to impress their awesome professor! :)

It's possible that might be the arrangement at your scleroderma center. It's worthwhile asking about it, at least. Sometimes they will also give an appointment with a resident to speed up your assimilation into their clinic, rather than have you wait for months on end trying to get to see the "top" doctor in their center. Quite often, it is a 3 to 4 month wait to get in for a first visit at a scleroderma center...provided the doctor is still accepting new patients, that is.

Good luck on this and let us know what you find out.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 RememberingToSmile

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Posted 07 April 2007 - 03:11 PM

Have you asked your general practitioner for advice? The progression/state of your symtoms may help make the decision.


When I was referred to the Sclero clinic, I chose to take the earlier appt and see the "junior" doctor asap. I couldn't be more pleased. He is bright, thorough, accessible, and takes as much time as I want to discuss my issues.

Let us know what you decide.
-RTS

#5 ErinF

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Posted 08 April 2007 - 02:17 AM

Hi everyone,

After calming down a bit :P I called my scleroderma center and they said that it's standard for new patients to meet with the resident first, but that he always comes in at the end of the appt. Especially after reading Shelley's post, I realized that this was totally okay and might even work best, because if the resident is up on all the new stuff AND wants to impress the expert, I could be in the best hands possible. The fact that I got in to see a scleroderma expert within a few weeks in and of itself is great for me. Sometimes I have a hard time seeing the positive side of things; I know that this is just normal adjustment to the diagnosis. This center is part of the sclero trials going on, so I know I'm going to the best place in my area.

I'm still scared about the "wait and see" thing--I'm so paranoid that the disease is just lurking in the early, untreatable stage and will rear its ugly head in a few years, just when I start to feel comfortable that it's never going to fully express. That's just something I'm going to have to work out. I mean, I could die in a car accident tomorrow and I don't worry about that, so I have to take that kind of attitude with this disease too. One day at a time!

And my friends and family are already geared up for stem cell transplant fund raising... ha ha :lol: Seriously, they're already planning how they're going to do it, which is just silly! They're all research heads and have spent hours on the internet--I get updates daily from my girlfriends about what we're going to do; I tell them they're being silly but it makes me feel loved and wanted, and gives me hope that no matter what the doctors say, it will somehow all work out in the end!

Warm hugs and thanks to everyone on this cold (in Illinois anyway!) day.

ErinF

#6 Clementine

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Posted 08 April 2007 - 05:55 AM

Erin,
I just wanted to tell you that you have a wonderful set of friends and family!!! Not everyone is so lucky....so give your friends and family an extra pat on the back.
xo
Jennifer

#7 TJ903

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Posted 09 April 2007 - 09:04 AM

Erin,

I'm waiting to hear if I've made the study, but went through exactly the same thing. MUSC has the same setup, but the residents and the doctors actually treated me as if I were the only one there that day. Dr. Silver sought me out to introduce himself and promise me that they will do everything they can for me. I was shocked that he came in himself, because to get an appt with him would've taken months that I don't have.

You are very lucky to have the support group that you do. I must hope that my insurance will pick up the costs and thanks to americanmike all of us are now armed with more info to help us get the best care we deserve.

I was diagnosed with Diffuse Sclero 01/04/07, and the going has been tough. This support group promised me that I would feel better about everything back in Jan & Feb, but I was skeptical. Not anymore, now I feel empowered and in control.
Many thanks to everyone for that!!!

You will find strength that you never knew you possessed, but you may also sink to depths that you never knew existed. Just keep your head pointed up, that's where the light is!

TJ903