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Finally going to make an appointment with a specialist

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#1 TamaraB


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Posted 04 June 2012 - 08:25 PM

Hey all

Well, I finally decided to make an appointment with the scleroderma experts in Texas. They want me to get copies of my medical records and fax it to them with my name, insurance, and phone number. After they look over the records they call you with an appointment. In order for me to get my medical records I am going to have to drive to each doctor's office, pay $5.00 for the first page and 25 cents for each subsequent page. My insurance allows you to view your medical records and print them out, it gives the procedures performed, the diagnosis, the date and doctors name, they won't accept that.....it has to be the records. I was wondering if any of you have been to this clinic and would a referral from my physician make the process any easier? Thanks for any advice that ANY of you have about this!! :)

#2 Shelley Ensz

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Posted 05 June 2012 - 06:14 PM

Hi Tamara,

Congrats on getting an appointment with a scleroderma expert!

Generally speaking, a referral is always a good thing, even if it isn't covered by insurance. Then your doctor's office would need to fax the records to them, and that would save you time and trouble, because they cannot charge for records that are sent to another doctor (for a second opinion, etc.)

I've never had to pay for any of my medical records. If for reason you put "second opinion" or to "consult a specialist", they usually don't charge. When you say that you want the records only for your own "personal use", then they might. You can request copies for a "second opinion" but have them given to you, and then make a copy for yourself.

Keep us posted on how its working out, okay?

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.

#3 miocean


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Posted 05 June 2012 - 08:38 PM

Hi Tamarra,

Best wishes with the scleroderma specialist. Here is my experience with records (this is in NJ in the U.S.):

1. A medical center usually makes you pay per page unless they are faxed to another doctor. I paid quite a bit to have all of the records of my transplant screening/tests from the Mayo Clinic but those records have a lot of information (and misinformation) in them. I wanted to get all the records from my initial scleroderma crisis, it would have been a pay per page and then I decided it was too much emotional energy to go back that far. There is no way a doctor of mine would accept all of those pages through the fax either. I believe your records have to be kept for 7 years.

2. Some doctors/centers will put copies of my tests in the mail, others will give them to me only if I pick them up personally. There seems to be no rhyme or reason to this. Does anyone know if there is a law about this?

3. The nurse at my pulmonolgist's informed me that if an office has EMRs (Electronic Medical Records) by law you have a right to a copy of the doctor's notes 3 days after the doctor's visit. That office makes you come to get them and seem to be the most informative of what is correct. My scleroderma center now gives me notes at the end of the visit but they are not as detailed as I would like. I almost wonder if this openness causes doctors not to write some things down...

Whenever I have a test done I ask for a copy of the report at that time and the doctor's office gives it to me. When I have a CT scan I ask for a copy of the disk, and last time duplicate copies, to bring to my various specialists. I keep everything in a binder and bring it all with me whenever I go to a doctor. My General Practitioner told me I was a little OCD (Obsessive Compulsive Disorder) but in a good way about keeping track of everything.

Good luck! It will be worth the time and effort. I am not sure what expert you are seeing but I know there is one in Texas that is considered one of the best in the world. PM me if you want to.

ISN Artist

#4 judyt


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Posted 05 June 2012 - 10:20 PM

Hi Tamara,

Like miocean I have kept copies of everything that it is practical to keep. I don't get a report every time I see my general practitioner of course, but if I have had a particular test or visit to another practitioner and have forgotten to ask at the time my general practitioner will run me a copy when I see her,

When I left the hospital this morning I got a copy of my discharge notes and my general practitioner will get a copy of those same pages. In there she has been asked to follow up the results of the blood tests they took this morning and when I get to see her in a couple of weeks I will be able to get copies of those results.

However, I don't have copies of anything prior to about 2002 when it was first suggested that I might have Scleroderma. I know that my disease has been active since I was 22 (1966 or so) and maybe before that but nobody recognised it in those days. I did however have insurance claims back to about 1982, and since my husband is quite fastidious about keeping records long after required to, I was able to make a summary of major things which had happened. Of course, because I live in New Zealand and we have a system more like the British one probably none of what I could do is helpful to you as far as historical facts go, but now that you know what to do you can keep your own records from here on in so whenever you need to see somebody new you have the information.

Best of luck and I hope this new centre will be right for you.

#5 TamaraB


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Posted 06 June 2012 - 09:16 AM

Thank you all so much for the advice, it has been very helpful! I will definately start asking for a copy of tests and things and keep a copy of my own medical records. I know that the specialist will need as much relevent information as they can get and that I should be more diligent in my own health care. I had gotten to the point that it all seemed quite pointless...disgusted with doctors, medicine, the whole thing, it's like they hear but don't LISTEN. Anyway, that's a different topic, sorry for going astray :blush: . You all are the best!! Well wishes to all!