It almost seems a lifetime ago that I was fighting for answers for all of my confusing symptoms.
For years I waited patiently for my doctors to come up with an answer to what was happening to my body, and nothing really happened. Well, actually, one particular doctor especially did keep trying to send me to a psychiatrist because, of course, my symptoms were “all in my head” (and a few other choice phrases). I was in my 30’s, and according to them, “too young” to be having the types of complaints that I had.
In fact, if it wasn’t for a doctor telling me to look up Fibromyalgia online that April in 2006 (that he finally diagnosed me with–then proceeded to tell me it was a “throw away diagnosis”)–I probably would have been a permanent resident of a psychiatric hospital by now because of them.
Literally. Pretty scary, right?
When I finally learned about the vast amount of quality medical information that was available online, and realized that Fibro didn’t answer all of my questions, I started researching my symptoms on my own.
It was about six months later that I learned my primary physician had lied to me about not having Multiple Sclerosis–because he never actually tested me for it. Had he tested me for it back in 2005, I believe that I may not have progressed with my illness(es) as much as I did after the meningitis attack. After he told me that I didn’t have MS, I even asked him if I was brain damaged because I wasn’t able to concentrate, comprehend a lot of things; my speech would slur and more. His reply was simply “no”, and he left the room.
Researching my symptoms changed my life for the better. It wasn’t easy at first–most doctors don’t appreciate a patient doing their own medical investigating. In fact, a lot of them frown upon it.
But, some doctors actually do appreciate it as long as you are well informed when you present it to them.
When I realized that my doctor(s) weren’t paying proper attention to my medical issues, I finally got away from the entire medical group four years later (it would have been sooner had I not had a case already pending about my disability). You could say that the treatment that I, and some of my family members received could have been considered malpractice because of the undertreatment and misdiagnoses that were taking place on a nearly consistent basis for several years.
Since handpicking my own doctors I have been diagnosed with Multiple Sclerosis, Systemic Lupus, Ehlers-Danlos, Epstein-Barr–the list is a page or two long so I won’t bore you with the details.
Check out the link to the article in the October 2016 issue of Neurology Now that agrees that patients want more input when it comes to their health. It offers some great tips to have better interaction with your physicians – and hopefully get a more timely diagnosis.
Good reading, and good luck with your research. ❤