I got an appointment at the Cleveland Clinic MS unit! Now I just have to get there, driving very slowly, with many stopovers, from my current location at the southernmost tip of Virginia.
The appointment coordinator actually offered me an appointment for Monday, but, uh…
Even one year ago I might have jumped into the saddle and been there tomorrow! But now it will have to be in short hops with many rest area stops to limp around and stretch my poor hands, which have been cramping up like nobody’s business and just giving me general hell.
Last night I read about neurodegenerative diseases, cried a lot, did a bunch of research and decided that I’d better at least get a more definitive diagnosis than the one offered by my neurosurgeon, e.g., “This weakness is not from your spine. You have some kind of neuromuscular disease. MS, probably. My PA will get you a referral.” After six months, I finally got an appointment offer. In another three months. In Phoenix. With a neurologist who specializes in epilepsy. Nah.
All I want is a diagnosis, and a prognosis. I want to make sure it’s not some other process like ALS, which is also on the table because of some abnormalities seen on my last MRI but not followed up on by the surgeon: not his department.
Will someone please tell me what happened to doctors, that they quit being doctors and started being fancy technicians?
What about the time(s) over the past 10 years that I’ve complained of total exhaustion and exercise intolerance and heat intolerance to my primary doc, and been sent to cardiologists who only found mild mitral valve prolapse, and the entire issue was scuttled: The End, no further questions, Your Honor?
How about the time I complained of exhausting fatigue and was offered stimulants??? Great. No thanks.
Or the most recent debacle where I fell down on the fucking treadmill after screaming that my legs were locking up on me (they do that if I use them much), so the cardiology techs dragged me off and threw me on the table so they could get their “post exercise” echo, later condemned as unreadable but billed to Medicare nonetheless? Exhaustion not of cardiac origin. And yet, you would think the cardiologist, being an M.D. and all, might have some other ideas regarding the etiology of extreme fatigue, muscle weakness and wasting, spasticity, and pain…wouldn’t you?
Granted, he did exhibit a modicum of holistic thought when he suggested my fatigue might be due to the naughty guts. Bingo! Yes, the guts do cause me fatigue, and I do buy that theory. But the guts do not give me muscle wasting, spasms, weakness, etc etc etc. They are just there to help make life miserable and to ensure that I don’t get proper nutrition.
I can’t even drink “Ensure,” because it is so full of lactose that even huge doses of lactase do not detoxify it for my enzyme-less guts. Fuck a bunch of guts, I want to live on sweet tea and clean, cool, dry air.
I want my diagnosis, and then I want to go back to Colorado where the air is clear and cool and the nights are cold. And when it comes winter, I’ll go back to the high desert. And when things get worse, I’ll know what to do.