This is it, ladies and gentlemen! The moment we've all been waiting for. Spark's diagnosis. The medical mystery is finito, or so it seems for now.
I brought this article to my g.p. I had gone over it with a highlighter to indicate which symptoms, in my humble lay-person's opinion, apply to me. According to my interpretation, I fit the criteria of a mild case of Myalgic Encephalomyelitis (the condition previously known as Chronic Fatigue Syndrome).
Post-exertion neuroimmune exhaustion: check. Neurocognitive impairments noticeable when I'm in a setback: check (mostly my short-term memory fizzles and I have to make significantly more effort to recall words and construct grammatically correct sentences). Non-inflammatory pain: check. Prolonged sleep: check. Muscle weakness: check. Sensititivities to food and medications: check. Low grade fever and intolerance of extreme temperatures: check. Fortunately I don't experience all of these all of the time. Most of them only affect me if I've overdone it again and am in an exhausted state. Only the food sensitivities are with me all the time.
My g.p. scanned the article, nodded, and said "Yep, that sounds right." Then he typed it into his computer, turned back to me and immediately started talking about treatment. Of course, currently there is no treatment for ME. Some of the symptoms can be medicated but the essential condition itself, no. It's still in the process of being accepted as a bona fide illness. Even the name ME for this condition is relatively new. The article I linked to was published mere weeks ago, in the July edition of the Journal of Internal Medicine.
The only thing my doctor could think of to offer me was anti-depressants, as they have been used off-label to treat chronic fatigue. I declined. He may as well have said to me "Hey, how'd you like to have a bunch of unpredictable and horrible side effects?" Because that's what most medications do for me: make things worse.
I explained that I only wanted the diagnosis on file just in case. In case I get called for jury duty and need a doctor's note to excuse me. In case, God forbid, my situation gets worse after my good boss retires, and I have to deal with a mean boss who wants to give me a hard time about my hours: I'll need to be able to point to a documented medical condition in order to be accomodated in my workplace. It also does feel better just to be able to tell people that I have something concrete. I'm tired of talking about my "mystery" or "chronic-fatigue-esque" condition. It sounds lame even to me.
It was a bit of an anticlimax. I thought that at least my doctor would want to refer me to a specialist for confirmation. But that was it. He typed the diagnosis into his computer. That was pretty much all he could do for me.
The best part has been telling a few select people. It is so good to have a proper name for it. Myalgic encephalomyelitis. It still takes me a few tries to spell it right. It does flow off the tongue in a satisfying way.
13 comments:
Congrats on the diagnosis Doctor Spark! Hopefully with the constant advances made there will be some better treatment options in the near future.
Congrats on finally finding out what exactly it is that you got.
I'm very surprised that it isn't a recognizable illness in Canada like it is here.
Ron: At work I occasionally receive promotional materials addressed to Dr. S. Red. I believe I am now qualified to accept that title and use it officially. Although I might go a step further and call myself Dr. Sir Lord Sparkling Red. (A real person did that in a book I just finished reading. I guess he was crazy but Dr. Sir Lord is a helluva title.)
G: Thanks. Although perhaps I'm just ignorant and it's more accepted than I assumed. I haven't done all that much research on current public opinion regarding CFS/ME, I just know I've heard a lot of anecdotal stories about peoples' symptoms being minimized by health professionals.
Well congratulations! I'm very happy it has a name!! Now let's get it some recognition!
Congrats, Spark! Now that you have a label for it, a proper name, you might be able to control that beast!
It's not great news, but it's better than not knowing. :)
Having a name to put on it is great! (In a strange, but likely comforting, way.) Glad your doctor was so quick to put it in your file and start addressing how to approach it...even if medication isn't a good idea.
Jameil: Thanks! I think what I like best about giving it a name is that now I'm not alone with some bizarre condition that only I can relate to. Now I can communicate with doctors and other ME-ers using a common language.
DarcKnyt: It is better than not knowing. Medical research is pretty space-age these days, so there's every chance that someone might have a bright idea regarding treatment other than just "make healthy choices" sometime soon.
Jenski: Yeah, my doctor is good that way. He doesn't take offence when I come in waving articles and diagnosing myself. I guess after all these years he's figured out that I'm a sensible person and that we can work together on all this jazz.
Yay! I am so glad you know for sure now. I am imagine someone somewhere is doing some research on treatment. I hope so.
The last time I was in my doctor's office she completed the exam, left the room and returned with some pages off the internet. She said, "I think this is what you have. I'm going to refer you to a specialist. Meanwhile research it on the internet and see what you think." Okay just who is getting paid here? LOL
Can you handle it better not that you have a name for it?
Yay for knowing! Knowledge is good, Truth is a beautiful thing. :)
I was unaware of the name change to ME, perhaps that was to separate it from Cystic Fibrosis.
Hopefully your doc will learn more about it too. :)
Now, the next phase of your life! Surviving ME with sparkle, by Spark! :)
Spark, this is HUGE! I am glad that you finally got a diagnosis. I was diagnosed with ME sixteen years ago and it was a huge relief to have a name for what was happening to me. Back in those days the only name for it was Chronic Fatigue Syndrome. I was so glad when they came out with a different term for it because CFS just didn't cut it, with doctors or when trying to tell friends what it was. The very name of it was a joke to many people and minimized the entire mess. Anyway...I do not blame you for turning down the antidepressants. Over the years they've tried me on so many of them and they made me feel so much worse. Others have found some relief in them, which is great but not me. Nowadays I stick to OTC stuff, vitamins, and a muscle relaxer when I really need it. That was good thinking of you to get it in your file.
Lynn: I hope so too. It would make sense; there would be a huge market for any effective pharmaceutical treatment.
Granny Annie: That happened to me last time I was at the opthalmologist! Granted, it was an intern who did the Googling. On one hand it would inspire more faith if the doctor knew it all ahead of time, on the other hand at least they're not afraid to say "I'd better look that up".
Kenju: Definitely. Telling a select few people has been a big relief.
DarcsFalcon: Indeed! The next phase is going to be good. :-)
Pixiebaby: It's very comforting for me to hear from someone who's been down this road before me. You're right, it is huge. The hugeness of it hit me more as a few days passed since my doctor appointment, and since writing this post.
I'm afraid of anti-depressants. So far I've never been able to tolerate any sedative (benzodiazepines), so obviously I have abnormal neurology. God only knows what anti-depressants would do. I'd probably turn into axe murderer or become psychotically suicidal. *shudder*
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