It has been 12 months of diagnostics and consultants and I am just about there. Yes, a diagnosis as early as Monday of next week if things go to plan.
Thinking back over the past year I thought I'd share with you the 4 best things I did that helped the process (many were recommended to me here!).
1. Prepare for the long haul.
While I have been sick for a few years, it was October 2015 that I started to get serious about finding a diagnosis. Having read the stories of others I knew this would not be straight forward. I have seen 7 different medical teams, given about 20 vials of blood and had a colonoscopy in the past 12 months. I have so many drugs that I rattle and I have daily pain. But it has been good to have been mentally prepared for a long haul, and also knowing that doctors will contradict each other. It is also important to prepare your life around a year of poor health and doctor's appointments. Knowing you are on a long diagnostic process helps you to stay sain.
2. Keep details of your symptoms
I was kind of ignored until I said I had arthralgia in my hands in the mornings. Then they listened. One of the best things I did was keep detailed daily notes of my symptoms over a period of 20 days (see image). I rated each symptom in terms of severity and I also gave each day a traffic light rating of red, amber or green. (Red meant I was bed bound, Green meant I had pain but I could function). Notes are detailed but can be scanned through quickly by a busy doctor. As I also have Bipolar I kept a rating of mood at the same time, so I could differentiate what was causing what.
Doctors LOVE data and this 20 day summary of symptoms has been used over and over again. If I'm asked "have you had mouth ulcers" I can say - "yes 6 times in the month - here is the data".
3. Get a copy of each pathology result
I'm in Australia and I am able to write my name on the pathology request so that I get a patient's copy of the pathology results. Because I have been through a series of doctors who look only at their "bit", having a full copy of the pathology results has dramatically improved the continuity of care I have received. One doctor was going to reorder a whole set of blood work, but I was able to show him that it had already been done. Other doctors have taken copies of the results that are of interest to them.
4. Get Organised
I attend each doctor appointment with a file that includes:
* the 20 day symptom view (including red/amber/green flags),
* a summary of key medical events over past 5 years (e.g. medical procedures, hospital visits, infections I remember),
* a summary of relevant family history,
* a one page summary of all doctors I'm seeing and their contact details,
* a list of medications I'm on, plus
* copies of all pathology.
Most of this is written down as I have a foggy brain and can't remember it all when asked! The good thing is that once it was written down I just handed it over 7 times, rather than having to remember it 7 times! For those days my brain doesn't work, I have the paper work to refer to "ummm ... it is here somewhere!"
I hope this list is helpful to anyone on the path to diagnosis!