An Arduous yet Necessary Task

One of the most important lessons I’ve learned along the way is to try to keep all medical records. Unfortunately, I’ve had to learn this the hard way.

I’ve been trying to compile a notebook with all my information as seen on a post at a most awesome blog: http://justmildlymedicated.blogspot.com/2013/02/being-your-own-medical-detective.html . Sadly, my section for labs/test results is quite slim. I guess I just have to begin somewhere and as I continue on this roller coaster ride, be sure to collect my records as I go. There are so many things in my past medical history that I now question as to whether they could be contributors to my illness, but I don’t have any records in my possession. Some of these issues were years ago and in some cases, I can’t even remember the doctor’s name.

For instance, years ago I experienced vertigo that was diagnosed as a viral thing. I was sent to a Neurologist for an MRI, nothing really came of it and I never saw that Neuro again, nor do I have records of the visit or the results. I also had some sort of Mumps virus a while back, but again, don’t have records of it. I was diagnosed with MRSA over 10 years ago, yet again, have no records of it. All these things could have been causative factors and I question all the time if any of these issues or a combination of them could have contributed to my state of health now. Point is…I don’t have records for any of this and again, in most cases cannot remember the doctor’s name.

Of course with my luck (just call me Murphy), in each case I saw different doctors. With insurance changes over the years and whatnot, I’ve never had any one doctor for a long period of time. My current GP is the only one that I have seen on somewhat of a consistent basis and that’s only been for the past 2 years. I so wish my children’s pediatrician was an adult doctor; we’ve been seeing him for 17 years.

Even though I was diagnosed with “what is probably POTS” back in 2009, I can’t help but wonder that there might be other health issues going on. The only way that I can know is to keep track of my vitals, symptoms, etc. I found a wonderful way to keep track of all these from yet another great blog: http://lethargicsmiles.wordpress.com/2013/04/01/daily-log-to-help-find-patterns/ . I used this as a template and made up my own document on Word that fits my personal needs, but this was a great jumping off point and I must thank Lethargicsmiles for it.

In my particular notebook I have the following sections so far in no particular order:

 ~A brief history of previous illness of which I have no records.

 ~A brief history of my illness beginning in 2009 to present.

 ~A list of all doctors I’ve seen and all medications/doses etc. Including  meds that I’ve had adverse reactions to.

 ~A section, however small at the moment, of my tests, labs and reports.

 ~A section on articles about POTS and any other syndromes I have questions about, in my case, Lupus, MCAS, Subtypes of POTS to name a few.

 ~Business cards of doctors I’ve seen.

 ~A section for questions to ask.

 ~A section for my daily logs.

 ~A section for current symptoms. I made chart for these based on frequency (Daily, 4-5x/week, 1-3x/week, Rarely/Never and Don't Know).

I will add to and subtract from as necessary, but I am hoping that this tool will be vital in my search for a true diagnosis.

 Moral of the story: When one is diagnosed with some weird-off-the-wall syndrome, it behooves said person to keep track of any and all information so as to receive the most comprehensive care. I think that it is imperative that I/we take control of my/our situations in life and it’s best to be prepared. Hey, it’s always worked for the Boy Scouts, why not us too??

Hopefully the doctors won’t think I’m some whackadoo with OCD tendencies and send me off to the nearest padded cell, in which case I hope there is a designated shelf for my notebook!