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7 replies to this topic

#1 Leslie R.

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Posted 06 June 2008 - 03:55 PM

Hi Everyone,

I wanted to share this with you, on what I have been doing since I started getting sick. Since it was very difficult in finding a diagnosis by doctors, I started typing each and every information about my physical and mental conditions, doctor's name, phone numbers, symptoms, medications, medical test done in the past and present , medical devices I use. Each time I have an appointment I take it along with me, I give copies to my husband and other family members. You see the point of this is that no doctor or anyone knows what you experiencing, and sometimes you forget to tell them. So I decided to take charge of my health, whether good or bad I keep a track on my health. Also make copies of all medical test done, prescriptions, keep receipts for income tax each year, whether if it is co-payments, prescriptions and transportation. It is important that we all have to be our own advocate for our health. Take notes during doctor appointments, ask questions, you can also take a friend or family member with you at the appointments. I hope this really help everyone like it have for me.

All the Best,

Leslie R.

#2 Kamlesh

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Posted 06 June 2008 - 06:12 PM

Hi Leslie,

It is great idea!
I have over a dozen doctors and I maintain all my medical records and notes.
I also maintain spreadsheets of results of blood tests and PFT tests. It gives visual presentation of many critical areas.
Kind regards,

Kamlesh


#3 barefut

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Posted 06 June 2008 - 07:46 PM

Hi Leslie,

Wow! I wish I could be as dilligent and organized as you. Have you ever thought of going into business? :lol: Seriously - I'd pay for that service.

#4 Margaret

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Posted 07 June 2008 - 03:24 AM

Hi Leslie ,

When Gareth was first diagnosed with Sclero 18 months ago, his Pediatrician told me to start keeping track of everything. He told me to get copies of all reports......PFT, endoscopies, blood work, cardiology reports, eye exams...........everything!!! He was right, because he now sees so many different doctors that I carry along his folder to each doctor's visit, which is up to 1 1/2 thick of copied reports. I, too, keep charts of the blood work.

Take care, Everyone.
Margaret

#5 Sweet

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Posted 07 June 2008 - 07:36 AM

Good for you Leslie!



I don't quite do all that you do, but I do have all of my complete records from all of my doctors/tests etc here at my house. I ask for copies right after each visit.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 LMS

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Posted 07 June 2008 - 02:18 PM

Hi Everyone,
I keep very detailed records as well and highly reccommend it for everyone. Besides, I get tired of answering the same questions from different doctors. When the questions start I pass over my book and my doctors love it.

LMS

#7 smac0719

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Posted 07 June 2008 - 04:41 PM

I too keep a binder of all my medical info. I found it was very necessary when I was going from Dr to Dr trying to get a diagnosis. Also, I have found that some of the doctors in my "network of doctors" don't get the other doctors notes and test results so I always ask for it and have my binder with me so they can make a copy. I have a standing 6 week order for labs so I asked my rheumatologist to put on my lab requests to send a copy to me. The labs will not give me a copy upon request. I try to keep an updated listing of all my physicians and medications. I also keep a copy on my person in the event something unforseen happens where I'm not able to verbalize this information. Unfortunately, my binder has gotten quite large but it really helps to have that information available. It took a while to organize it originally, but now I just add to it upon each visit or test.
I may have Scleroderma, but Scleroderma doesn't have me!

#8 Leslie R.

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Posted 08 June 2008 - 02:48 PM

Hi Everyone,

Thanks for the replies I am happy to hear that you are keeping records, and doing other things. Taking charge of your health and life to over come this disease. I think it does help and I personally will like to share information from my health that might help someone. I think by coming to this forum and looking at each topic, does do great help and support. I love you guys and bless each one of you.

Sincerely,
Leslie R