Tuesday, February 12, 2013

Being your own Medical Detective (because it sounds cooler than Patient Advocate)


When you have a chronic illness you tend to see numerous doctors. The first few years can be especially difficult as you will more than likely see multiple specialists in multiple fields before settling in on your team. I am still in the process of finding my dream team and being an Army wife I am destined to start this exhausting process again in a new location at some point.

I am used to collecting my medical records, especially test and lab results. Before being diagnosed with Dysautonomia this was just something we did to help make sure our medical history, mostly kids immunizations, weren't lost in the shuffle of moving. Now it serves more of a purpose. I am my own patient advocate, I mean Medical Detective or maybe I will call myself a CSI, Chronically Searching Investigator.

If you need to become your own Medical Detective or you are responsible for being the detective for someone you love here are a few tips I have learned along the way. If you have others please post them in the comments, I’d love to hear your ideas:
  • Take notes and ask for clarification on anything you don’t understand.
  • Ask for a copy of your records regularly (including labs and tests).
  • Be calm and polite but always ask about discrepancies or things still unclear.
  • You are not a doctor and should not diagnose yourself but you are resourceful, look up terms you are not familiar with. Use credible websites, Mayo Clinic is a great resource.
  • Keep an updated printed list of all medications and dosages.
  • Call the insurance company with any questions regarding coverage.
  • Keep loved ones in the loop. They don’t have to know every detail but another family member, friend or neighbor with a copy of your diagnosis and medications could be a life saver.
  • Do not be afraid to dump a doctor that isn't working out for you. If you’re a Medical Detective it is possible you can do so with reasons given to both the office/hospital and your insurance company that could be beneficial for others.

I will say there was a time early on during my diagnostic phase that some of the people closest to me thought I was going bonkers reading and re-reading tilt table test results and comparing blood pressure and heart rate results sitting verses standing. I know my husband at one point really wished I would put the records away and stop looking up medical terms online. I will say I am glad I poured over those records; it was how I knew the right questions to ask. Some of those questions led to the end of my seeing certain doctors and the beginning of my finding new ones.



The case of the Potassium Cover Up:

In November I was admitted to the hospital for bradycardia (slow heart rate) I wrote about that visit here.  I was observed and kept on my regular medications and was told my potassium was “a little low” and given a potassium supplement. I didn't think much about the whole visit until I was having the same symptoms again about 2 months later.

While waiting to figure out what was happening I was going through my Facebook news-feed hoping to be entertained. I then saw an update from one of my favorite chronic illness bloggers.

“Two days without a potassium supplement (script ran out) and worst arrhythmia I've ever had, actually started thinking I might have to ER it (and as long time readers know I avoid that like the plague, see link below). Started taking it again and arrhythmia is gone. I knew Florinef could drop your potassium quickly, but this is the first time I cocked up and didn't have the new script on hand. Lesson for the day for anyone on Florinef, potassium supplementation (either high K+ diet and/or pills) is damn important. Even the beginning of hypokalemia is not fun to deal with.” Living With Bob

Umm, I am on Florinef, my potassium was “a little low”… I stopped taking it because it was HUGE and no one stressed it was important at all. My getting the potassium supplement was a bit more like ‘we don’t know what to do with you here is a supplement’.


After a few questions and some checking lab records sure enough, when I was hospitalized my levels were low enough to be considered Hypokalemia. Hmm, might have been nice if someone mentioned that. I was able to avoid another hospital stay with the promise of getting right back on the potassium.


The case of the Ever Elusive Diagnosis:

I admit that Dysautonomia is a difficult to diagnose and treat due to lack of knowledge, but a main frustration is that it seems like I can never get any two doctors on the same page. When I visited the Center for Autonomic Dysfunction we went over many overlapping and secondary conditions, the final outcome was Dysautonomia - Pure Autonomic Failure. Pure Autonomic Failure (PAF) or Bradbury-Eggleston syndrome as defined by the Rare Disease Network, is a peripheral degenerative disorder of the autonomic nervous system presenting in middle to late life, and affecting men more often than women. The disorder appears to be confined to the sympathetic and parasympathetic nervous systems. However when looking over my latest records from my local Neurologist I found this:


Now I do have Dysautonomia and it is true that my mother and daughter have been officially diagnosed and it is my belief that my cousin and sister also have some type of Dysautonomia, however Familial Dysautonmia is a completely different type of Autonomic dysfunction than what I have been diagnosed with. 

In closing ask questions, keep records and expect answers. If you can add in a smile it will go a long way!


4/4/2013 AN UPDATE: 

After some time and effort I have a medical records book of my Dysautonomia journey to bring with me. Separated by medical specialty, tests, and labs ... this is where my healthy friends think I am OCD and my chronically awesome friends want to hire me to do this for them ;)


11 comments:

  1. This is an awesome post!! I love how you are using this platform to educate people and helping them to have an easier journey as you have forged the trail ahead of them. You are awesome!!
    V

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  2. Those are great suggestions. I have found that getting copies of the letters that specialists send to your general practitioner is very enlightening. After 7 years with chronic pain, when my pain specialist retired I asked for a copy of his letters and found out that not only is the pain permanent, but there was nothing else that could be done - which was a far cry from his kind 'well, it might get easier in 20 years' platitudes.
    I now take my collection of letters to every new doctor I see as well as a time line of when problems happened, operations, treatments etc. Of course it only helps when the doctor bothers to read them!

    Knowledge is power, especially when you are chronically ill :)

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  3. Thanks for the shout out, babe. The potassium issue is huge and the information from doctors seems haphazard at best. Had an amazing response to that one status update which is a sad indictment on the medical system around the world.

    Love this post. You really do have to be your own advocate/investigator with illness. In many respects I see my doctors as just a cog in the machine now. I see so many specialists and have so many tests few doctors have a good overview of my whole presentation and simply don't have time to collate it all. So I take on the roll of summarising and putting all the pieces together into a coherent form. It definitely helps that I have a background in health, especially neurology, in our case.

    Bad form that they put down FD on your history as it's such a specific illness. I really don't think some of them understand what they write at all. xx

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  5. Great post - some wonderful suggestions. One thing I have been doing, as a more detailed form of keeping records - I made a spreadsheet of all blood tests I've had done and the date of the test so I can see trends. For example, in May 2008 my iron was 3. Six months later it was 11 (and so on). All of that information is in my records, but this way I have the data right next to each other for easy comparison. It's interesting to see the fluctuations in my sodium, potassium, and white blood cells over time and pin point it to certain events.

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  6. Fantastic suggestions. I am currently going through early stages of having been diagnosed with Fibromyalgia, so I can completely relate. One additional piece I might add, in regards to your records, is make sure that the conversations you are having with your doctors, in term of issues and limitations, is properly documented IN your records. I currently am having an issue where I have been denied disability for my Fibro and other conditions. Even though I provided all my records and a full report (by a Fibromyalgia specialist) stating my limitations, I was still denied because the in office visits did not fully back up there over all report.

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  7. "CSI" is perfect! I love that.

    I always have to write down specific symptoms/problems I've been having because if I don't, I always leave and realize I forgot to mention something. Of course, with brain fog from lyme/lupus I have to write down pretty much anything so I don't forget it! :P

    I hope things go well at Mayo. Will be praying for ya!!!

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  8. This has got to be the best post I've ever read about the importance of and best way to keep your own records. Thank you so much for sharing this!

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  9. This is very informative. I make 3 ring binders for everything, my boyfriend thought I was nuts the first time we flew together but was happy to have everything in one place.

    I have used the voice recorder on my cell phone to record appointments.Your doctor has to approve being recorded.

    I try to keep medical records releases at my home so if I forgot to do one at the office, I can fax over the request when I get home.I barely remembered after my neck surgeries and figure it might happen in this newest medical adventure..

    thank you for your words of wisdom. They are amazing.

    Kristy

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