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Appointment with my Scleroderma expert.

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#1 marsha


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Posted 22 June 2011 - 11:33 AM

I just would like to thank miocean for steering me in the direction of the doctor. I emailed him and in less than an hour I received a reply and he had an opening for July. So I am headed off to see him. He didn't specify what I should bring, I am not sure what I should bring, My journal, and I am thinking that I should also bring all the files from the doctors I have seen and any new blood work results. Is there anything that I am missing? Not sure what questions to ask either.

Thanks Everyone,


#2 Amanda Thorpe

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Posted 22 June 2011 - 11:45 AM

Hello Marsha

What a relief for you knowing you're going to be seeing a scleroderma expert. Consider taking someone in with you so they can remember what you won't and write a list of questions down so you remember to ask everything you want. I suppose you'll want to ask about your current symptoms, best treatment etc.

Take care and keep posting.
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#3 marsha


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Posted 22 June 2011 - 12:35 PM

Great idea Amanda!!

I guess my Mom will be the one to take with me to take notes. I can't tell you how excited I am!

#4 miocean


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Posted 22 June 2011 - 08:30 PM

That's great to hear. :emoticons-line-dance: I would bring everything with me but I would email him and ask him in advance what he is most interested in having. Since my major issues were my lung fibrosis he wanted the actual CT scans, not just the reports. I had been to a lung specialist the week before who graphed all my data from lung function tests so that was all ready for him.

You have plenty of time to be well prepared for the visit and get everything he needs. I brought things he didn't need to look at but at least I had them if he did. You will need a list of your medications and one thing I always have for my doctors to put in their files is a list of all my doctors, their specialty, and contact info (phone and fax).

Please keep us posted. I would have loved to just sat and talked with him for a long time but he is a busy man. He spent about 1 1/2 hours with me and did not rush.

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#5 Chopper


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Posted 23 June 2011 - 08:37 AM

How exciting you get to be seen by a specialist of that calibre! My two cents: take a recorder. My friend took a recorder to her scleroderma specialist and he didn't mind she did that. Of course we'll all want to hear how your visit goes!

Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#6 marsha


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Posted 23 June 2011 - 08:05 PM

I just got the paperwork, it says to bring all testing. Lung functions? I have never had this done! I am so excited to go to this appointment. I will definitely bring a recorder; that is a wonderful idea Chopper! Thank you all so much I will keep you all posted.


#7 Joelf


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Posted 24 June 2011 - 03:35 PM

Hi Marsha,

Marvellous news!! It's wonderful to see a consultant in whom you can have complete confidence (I know this myself! ;) )

In my case it was my lungs that were mainly affected so it was very important that I had Lung Function tests regularly. I'm not totally sure of the procedure in the US but I had (and still have) Lung Function Tests just before I see my consultants so they have an up to date picture of the state of my lungs before each consultation. I would imagine similar would happen to you? It might be worth enquiring whether it will be necessary for you to have these tests done before you have your appointment.

Please do keep us posted as to how you get on with your consultation.

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#8 Snowbird


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Posted 26 June 2011 - 04:51 PM

Hi Marsha

Sounds like you're ready to me! Your list of questions/concerns, list of medications and supplements, medical records/test results and someone (your mom) to take notes for you while you discuss with the doctor! If you can get a PFT (Pulmonary Function Test = Lungs) done and the results back in time to take with you, that would be good too! If you are not able to do that, I'm sure he'll order his own if need be. Good luck and I also look forward to your update!
Sending good wishes your way!