Laura Chamberlain’s story of spending 15 years with an ME/CFS diagnosis only to be told she has what should have been a relatively simple, curable case of lyme is an all too common story. It’s her story, which I read a few days prior to my last neurology appointment that prompted me to insist that I be tested for lyme in case the gaggle of doctors before him overlooked it. It didn’t turn out to be the case for me, but like Laura, I am more convinced than ever that ME/CFS is a misdiagnosis for me, too. Only what I have will require further testing and more fighting and is pretty much in the same category as ME/CFS. It’s a little heard of, much misunderstood genetic disorder called Ehlers-Danlos Syndrome (EDS) and it’s probably going to be my new favorite subject for a while.
First, I want to stress how very important it truly is to KEEP SEEKING ANSWERS AND TREATMENTS until they have found a true, undeniable biomarker that proves unconditionally that ME/CFS is what you have or every other possibility has been ruled out by 100%, cost be damned. It’s too often misdiagnosed and you could be suffering for nothing with a disease that actually has treatments because some doctor was too lazy or suspicious of your motivations to do their job for you.
I’ve kind of lost sight of the fact that these are the reasons I started this blog; to help those who are sick and have inadequate help or are misdiagnosed and need help managing their symptoms while seeking solutions and treatments with the right providers. Of course for a while I became so ill I couldn’t even rely on myself, but the experience definitely helped me to understand a great deal and extend my knowledge base, I suppose proving that most hated addage true: what doesn’t kill you makes you stronger. Certainly not literally in my case, but it certainly helped me bone up on my knowledge, my defenses, and helped me take stock of my life. Bad doctors and diagnoses aren’t the only things I’m working on eliminating.