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Specialist Appointment

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#1 enjoytheride


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Posted 15 May 2011 - 10:03 AM

I'm not sure why I'm posting this except partly as a whine and partly as a heads up to those of you making such appointments.

I had asked my local rheumatologist for a referral to a scleroderma center. I did not hear back from them directly but I did get a call from the scheduling people there. That lady said I had an appointment within a week but I told her that it needed more than that amount of time to make arrangements so she scheduled me with another doctor in 3 weeks. Great- whooeee for me.

So I make the 10 hour trip down on the bus, have a two day stay at a hotel and show up first thing Monday May 2 at 9:15 am at the clinic. They were running late but I did see the doctor. With my extensive file in hand.

But her exam was puzzling to me. I explained the things that I had felt were unresolved with my local rheumatologist and the problems I was having with meds. It took a bit for me to realize she didn't know why I was there. So I told her about the differing diagnosises and the conflicting statements from my local doctor. She said okay. Looked me over, said it was nice to see someone with CREST doing so well and sent me off for a lot of blood tests which she said she would discuss with my local Internists. I headed home.

I've not heard from her since but the whole thing seemed very superficial. Certainly not informative. I started looking up her bio on their website. She is a specialist in osteo-arthritis forcusing on hip problems! So I scouted around the site some more and found that the appointment I had was with the arthritis clinic, not the scleroderma clinic. Aargh! I have just spent a $1000 (hotel, bus tickets and co-pays) to get to the wrong doctor.

Hopefully some good will come of all the blood tests but at the least I will not feel that I have had the best advice. I don't know if my local doctor got the referral to the wrong place or the scheduler was incorrect or I never made it clear enough to begin with although I can't ever remember complaining of arthritis although my fingers are swollen and the joint twisted.

I could just cry. Or at least whine a lot here...

#2 miocean


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Posted 15 May 2011 - 11:31 AM

Dean enjoytheride,
Well, you certainly didn't enjoy THAT ride! I would be so frustrated. :temper-tantrum: Do they have a return policy like a department store..they should. When you think of it, it is a very scary medical world out there. You put your trust, life, and money into the hands of "professionals" and they screw up. I know they are human and have a lot of pressure on them between the insurance system today, their patients, and the changes in the medical field but the scheduling department made a big mistake when they scheduled you with that doctor and the doctor should have been upfront and told you she was not the right person to see. :emoticon-bang-head:

Thinking of you,

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#3 annkd


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Posted 15 May 2011 - 11:55 AM

:emoticon-crying-kleenex: I am crying right along with you! This is crazy. I think I would send a bill to the doctor ( if he was, in fact, the person who got it all wrong). I have read your posts and I can't imagine how it could have gone this wrong. All that travel would have me in bed for weeks. Are you going to confront the doctor? Maybe you should send a letter to him. I hope you can get this sorted out and let us know about your blood test results. Hang in there!! :emoticon-hug: - Ann

#4 Shelley Ensz

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Posted 15 May 2011 - 12:56 PM

Hi Enjoytheride,

I'm sorry that things got confused with your appointment like that.

Obviously, where things went wrong was when they scheduled you with another doctor. The thing is, nearly all the scleroderma centers are rheumatologists who are just a small part of a larger rheumatology clinic. So it is extremely important to insist on only the scleroderma experts, as you have so unfortunately found out the hard way. Also, it is not safe to always rely on the appointment clerks, for I have often heard them say, "Oh, ALL of our doctors treat scleroderma patients." I have even heard that locally when calling around to find a new specialist - even though you know, for a fact, this could not be the case because the clerk doesn't even have a clue what scleroderma is.

I suppose you'll need to see how things come out in the wash. I suspect that you'll probably have to go see the real expert in the future so in the meantime, I would think that you wouldn't want to burn any bridges with the center. In the future, I'm sure you'll never take it for granted that you are ever getting the right specialist and perhaps your experience will also keep the rest of us on our toes when making -- or, especially, changing -- appointments.

I'm sorry this happened. I hope it all rights itself, eventually.
Warm Hugs,

Shelley Ensz
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#5 Amanda Thorpe

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Posted 15 May 2011 - 01:28 PM

Hello ETR

That's totally outrageous and you must be so disappointed but at least she confirmed the CREST diagnosis. I hope you get some satisfaction from this and I've no doubt that others will benefit from your experience, thanks for sharing it.

Take care.
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#6 Joelf


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Posted 15 May 2011 - 02:00 PM

Hi Enjoy,

I am sorry to read your cautionary tale; how very frustrating and infuriating for you! :o :(

I suppose the only advantage is that the experience will make you extra careful to make sure you get to see the correct specialist in the future and will serve as a reminder to the rest of us about the necessity of seeing the right person for the job.

Thanks for sharing!! :)
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#7 enjoytheride


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Posted 15 May 2011 - 05:51 PM

Thank you all- I appreciate the sympathy. In fact I needed it.

I did not have a clue the whole time except for the doctor's confusion about what I wanted. All the signs said "rheumatology" but they run different clinics on different days. What was really funny now that I understand better was the note of glee in the doctor's voice when she looked at my hands and said, "Looks like a bit of osteoarthritis there." It was probably the first thing she saw that fit into her specialty.

#8 uknlv18


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Posted 16 May 2011 - 04:45 AM

I worked for the insurance companies when I was in the US, talk to your insurance company as they will have who you were referred to, they have to confirm that it is 'ok' for you to see this specialist. If it shows that you were referred to the Scleroderma clinic and it was a mistake on the part of the scheduling, you can request your co-payments back, and you may even get back the money spent for the travel and hotel, if it was indeed the fault of the scheduling.

I hope it works out in the end, and you get to see the right doctors!


#9 Chopper


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Posted 17 May 2011 - 08:48 AM

Oh....my.....goodness! I can't imagine your frustration! That story is unbelievable. I sure hope there is some good come out of this - like reimbursement and special treatment and free visits! Thanks for the caution and I'm sorry you went through that! I hope you were at least able to do some sight-seeing or have a nice lunch or dinner while you were there. That's what I try to do for my appointments out of town. Let us know how this turns out for you!
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#10 Sweet


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Posted 19 May 2011 - 10:19 AM

Oh No!!! Is there a way to get this rectified?? Can they reschedule you, and PAY for all your expenses?? I'm really sorry. :emoticons-group-hug:
Warm and gentle hugs,

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#11 debonair susie

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Posted 19 May 2011 - 12:13 PM

I SO agree with unklv, enjoytheride...

if you DO have medical insurance, please contact them and inform them of what happened...they SHOULD advocate on your behalf, as well as their own, that this in fact, was not YOUR error. If you have not acted on this now, please do so ASAP.

Very Soft :emoticon-hug: being sent your way to help with your resolve of this matter...Now, You GO GIRL!!!
Special Hugs,

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