One of the quickest realizations I came to when beginning my quest for diagnosis and health care treatment was the lack of communication among the various healthcare providers seen for this disease.
Lack of communication leads to several problems, primarily, medication interactions, duplicated tests, and misdiagnosis to name a few. Multiple Sclerosis is a disease that has many mimics and many symptoms that range in frequency, intensity and duration from patient to patient. This makes it exceptionally difficult to initially diagnose. There are a few things you can do to make the process easier.
The first thing one can do to take control of their healthcare is to interview family members and discover a health history. Make a list of family members, diseases, ages, dates of diagnosis, dates of death if relevant, and relationship to you. This establishes the genetic link and helps determine if there is an increased risk for you. Place this document in your own personal health file and carry it with you to every doctor you are referred to.
What’s next? The next thing to do is to make a list of all current medications, the dosage and the reason you take them and place that in your personal health file. This is especially important when seeing a new doctor. Medications can interact and a new doctor or specialist will not necessarily know your previous conditions. Remember; many diseases mimic MS, making any previously diagnosed illness or symptom especially crucial for your health care provider to know.
By now; if your like most of us, you have a pretty fair little file building up. You have this file tucked under your arm and your headed to the first of many tests. Perhaps your MRI? Here is where it gets tricky. Some places have doctors that read the scans immediately right there with you sitting next to them; I was lucky enough to have that. Simply asked the doctor if he would be so kind as to burn a copy of the CD and a copy of his typed report. They still send the same information to the requesting doctor, but you guessed it, place a copy in a plastic sleeve that attaches to your personal health file. Keep copies of each and every test result. My MS specialist was very grateful when I showed up with all of the relevant testing documents already cataloged for his evaluation. He was actually able to make my diagnosis within the first visit because my records were so complete.
So now you’ve gone through all of your testing, you’ve requested copies of each and every result and placed them in your file. You’ve updated any medications and evaluations. You’ve always made note of any new symptom and the time of day they occurred. You’ve noted any medication reactions. Now sit down and type a chronological diary of everything. Simply start with the date and type what happened. Maybe it was a day where you had a strange symptom, then the next day you had a test done, the following day you saw a doctor. Just type an event summary. This gives a doctor or hospital quick reference to your history.
This file you are creating is a living document. It should remain with you at all times and be updated the moment something changes or occurs. I carry mine in my backpack that goes everywhere with me; this way, if I am suddenly taken to the hospital, they have instant access to all of my records.