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Writing your own medical history

Discussion in 'General ME/CFS Discussion' started by angee111, May 31, 2015.

  1. angee111

    angee111

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    Has anybody undertaken the enormously challenging task of writing your own medical history, being precise as possible and highlighting issues you are particularly concerned about? Has anyone accessed their medical records, read through them and discovered anything interesting?

    It has recently occurred to me that thoroughly sifting through my medical past, I may stumble across something that might give an indication of early physiological dysfunction that may have allowed ME/CFS to manifest, which likely would not have happened in an otherwise healthy body. I believe that for my own personal ease of mind, as well as assisting future interactions with doctors run smoother, it may be beneficial to write and read an extensive history of our personal medical records.

    Has anybody done this?
     
    belize44 likes this.
  2. SwanRonson

    SwanRonson Senior Member

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    I've been keeping a journal of everything I take, how I sleep, bowel movements, everything I eat, how I feel each day for about 6months. I highly recommend it along with always getting copies of your lab results and correspondence to keep in a folder. I can't say that it's helped find any correlation but it does help when seeing new doctors.
     
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  3. ahmo

    ahmo Senior Member

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    In the early years of my illness I struggled to write as complete an account of my past and present history as possible. I found that drs. weren't actually interested. No doc looked at it thoughtfully to try to make sense of the picture I'd painted. And, I believe it was when applying for US disability, I was deemed not unwell since I could write such a document.

    I just watched Michael Moore's Sicko for the 1st time last night. Getting behind the scenes of the process of denying people services....You might fare better than I, I sincerely hope so. It's worth it for you, if only to have clarity in your own mind.:balanced:

    Here are some blog posts from @Andrew that might give you some idea.
     
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  4. angee111

    angee111

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    @SwanRonson that's a great idea! I started doing that when I first began seeing my current GP, to measure whether certain foods triggered certain reactions (headaches, bloating etc.) but as gastrointestinal issues and chronic headaches subsided.. I have slacked off. Has addressing any abnormal lab results helped improve any symptoms at all?

    @ahmo ah, that's very unfortunate /: I suppose it would depend on the doctor though.. I'm sure some would be interested but your average run of the mill GP almost certainly wouldn't be /: Were you eventually able to be successful in your claim? Thanks for the link and the good wishes ! :)
     
  5. helen1

    helen1 Senior Member

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    I have a copy of all my lab tests and keep a health journal. It's been 3 years now. I've also written my health history as requested by one integrative doc so have that on hand for any health practitioners I've seen since. I also research any abnormal lab results myself before seeing a doc.

    So far addressing abnormal lab results has helped a lot with digestive issues, mood and sleep. It's also made me aware of what I'll need to address sooner or later i.e. infections.

    I recommend it.
     
    angee111 likes this.
  6. SickOfSickness

    SickOfSickness Senior Member

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    Yes I tried a write a complete one. I had some disturbing new symptoms and was seen by many doctors. Unfortunately my history mostly gave them more reasons to think it was psychiatric.

    Personally, I advocate omitting or downplaying most psychological/mood symptoms. It has been shown that once a patient gets labelled with psychosomatic problems, they are less likely to get any help besides being offered psychiatric medications.

    I think it's very important to get all your medical records and keep backups.

    A journal of symptoms, supplements, etc is a great idea. You can also track pain levels, heart rate, how much activity you did, how much you slept, etc. There are threads on tracking sleep quality.
     
    angee111 likes this.
  7. GONZ0hunter

    GONZ0hunter

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    Fragelle rock, USA
    I have my complete medical history in a couple forms. I have an iPad app that has every diagnosis, medicine (now taking or ever took) surgery, an excel of all labs, dr visit, pain log out puts, family hx, and imaging. This is great when a dr is asking about something related to my history.

    So when we do a med check I hand my iPad to the nurse or email it.

    I also maintain a pain and activity log on an app. Then I take an output of it and give it to,all my Drs. I can run a report that shows better or worse and log events like new med or seizures. It also scrubs for weather data so we can look at that.

    We also maintain a binder with my entire medical record from every dr. Our attorney has a copy of this as well. We bring them to every dr visit. Sometimes Drs say. Let's run x test. I look at my excel sheet and we talk.

    One last thought, when you have all,the data you are in charge. When your in charge you are the captain

    Sorry for the long post
     

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  8. GONZ0hunter

    GONZ0hunter

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    Fragelle rock, USA
    One other comment, my immunologist literally leaped out of his chair and hugged my binder with my entire health hx. He said he read every page of the 200.

    He found I had a primary immune dyfincey disease using this data and a few new tests.

    When he diagnosed me he ran around collecting Drs to bring in to talk about case.

    So their are Drs that care.my attorney also said it helps disability cases.
     
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  9. angee111

    angee111

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    Thanks for the tips everyone! My current GP has a basic health history, but given what it contains I suspect there are more episodes of health issues of interest than she current realises. I agree psychological symptoms should be downgraded.. but it's a fine line between what is deemed neurological and psychological. I find that when my symptoms subsides, so does my awful mood and vice versa. Mostly because I feel I have some sort of control over my life and body, however temporary it may be. It's very hard to enjoy things when you have a constant headache!

    @GONZ0hunter that is an excellent idea! I agree, by knowing your own health history, understanding it and using it to help point clinicians in the right direction you are empowering yourself in an incredible way. Most of us have no medical training and thus cannot make concrete diagnosis or links, but if we educate ourselves enough along with help from professionals; it really does help clear things up and understand things from a medical perspective!
     
  10. GONZ0hunter

    GONZ0hunter

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    Fragelle rock, USA
    Let me know if I can help. You want a app that is local. When you have 10 minutes with a dr they won't wait around for it to download.
     
    angee111 likes this.
  11. geraldt52

    geraldt52 Senior Member

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    That is exactly my experience. Everything I did to try to make things clear and legitimate was treated as an "obsession" by doctors, and as "evidence", that I wasn't that ill, by Social Security.
     
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  12. GONZ0hunter

    GONZ0hunter

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    Fragelle rock, USA
    Did you have an attorney?
     
  13. geraldt52

    geraldt52 Senior Member

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    I did. I consulted with her before filing the first piece of paperwork with Soc Sec, and she specialized in Social Security Disability cases, having done hundreds.

    After reviewing everything I provided, she warned me that CFS cases were tricky, and that the simple luck of the draw, mainly which Administrative Law Judge (ALJ) heard the case, would likely determine the early outcome. She actually assured me that I would eventually win based on the evidence, but to be prepared that it might take a very long time. I wasn't lucky in the draw, and it took 7 years. I have nothing but contempt for the system.
     
    angee111 likes this.
  14. GONZ0hunter

    GONZ0hunter

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    Fragelle rock, USA

    Interesting. My guy said the same thing about luck of the draw.
     

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