So, this post is long overdue, but my life has been turned upside down since my last post. Some of you may recall my post of late February, titled “No” (you can read it here.) Basically, it was about the fact that with my illness I’d had nothing but twelve years of “no.” I had seen dozens of doctors all over the country, and had gotten no diagnosis and no help for my symptoms. I had been forced to give up more and more things I loved. And at the point of that post, I had just been denied disability payments, and that was the last straw. I just couldn’t keep going with a positive attitude, and had lost all hope. I ended the blog with a plea for just one teensy-weensy yes.
Well, guess what? I got a GREAT BIG YES the week after writing that blog - I GOT A DIAGNOSIS!!!!!! Can you believe it?!? I still can’t quite believe it myself! And it was a doctor here in town who was able to finally diagnose me - not one of the specialists at Harborview or the Cleveland Clinic. Amazing!!
Here’s how it happened:
My neurologist (the wonderful Dr. David Greeley of Northwest Neurological) had reached the end of his knowledge and what to try. But he still didn’t give up, and referred me to see Dr. Chris Valley, a naturopath who works at Arthritis Northwest. Dr. Greeley hoped that Dr. Valley might be able to bring a “fresh pair of eyes” to my situation, and approach the problem “from a new angle.” I agreed to see Dr. Valley, even though I’d seen a naturopath early on in my illness, and he’d been unable to help me. In fact, the day of my appointment, I almost cancelled, because I was afraid to face another doctor who had nothing but “no” for me. Nevertheless, I went. (Thank God!)
Dr. Valley asked me to tell him about my illness, how it started, how it progressed, etc. He listened intently, and asked a lot of very good questions. At the end of my spiel, he said, “Well, I think I know what you have.” My jaw nearly hit the floor, and I said something like, “You’re kidding! Really? What?!?” He said, “I think you have Systemic Exertion Intolerance Disease.” He went on to describe the disease and said it’s actually a new disease definition from the Institute of Medicine - only a couple of years old. The disease is characterized by exertion intolerance (duh) and non-refreshing sleep, both of which I have in spades! He said there is a neurological component as well as a muscle component (in the mitochondria.) He said my description of the onset of my illness was “practically textbook” as to how the disease begins. And he said the muscle shakes that I get when I contract any muscle is often a symptom - and he’s seen other patients with SEID who have the same shakes. (This is the first time ANYONE has been able to recognize what my muscle shakes are, and pin them to a disease.) He also said he had the benefit of 12 years of my medical records, full of tests showing what I didn’t have.
I was just stunned. Simply stunned. I used to imagine what I’d do when I got a diagnosis, and usually pictured myself sobbing hysterically in relief. When it really happened, I just sat there gaping at him for the rest of the appointment! My mind was really having a hard time grasping the reality of a diagnosis. And for weeks afterwards, I’d find myself thinking about what I should try next or where I should go to see more doctors. I would have to stop that train of thought and re-realize that I have a diagnosis and I can stop the endless search for the next attempt at a diagnosis/cure. Even now, almost 2 months later, it seems unreal to finally KNOW what’s wrong! Twelve years of wondering, searching, seeking - and finally I know! I feel like a ton of bricks has been lifted off my shoulders! It’s an amazing feeling!
So, that’s the good news - a diagnosis, at last! The bad news is that there is no cure for this. It is a chronic disease. However, there are treatments that can improve my symptoms, and Dr. Valley said he’s “very confident” that he can “significantly” improve my quality of life. He said that because I’ve gone untreated for so long, I have a very severe case of SEID, and he’s doubtful that I’ll ever be able to work again. (Sadness.) BUT, he said that with proper treatment and management of my energy, I should be able to be much more active - that taking a shower won’t always exhaust me, that I will be able to take the dog for a walk and do light housework and maybe even putter around in the yard a bit. In other words, I can progress to the point of a normal ‘sedentary’ individual - which for me would be AWESOME! I’ll probably never be able to ride a bike again (more sadness) or work out in any way (even more sadness) but if I can do normal everyday things without being exhausted, I’ll be thrilled!
I’ve started treatment with a prescription to help the neurological component, and some supplements (normally used by body-builders - LOL) to help the muscular component. And I can already feel a difference - my muscles don’t feel so awful. And I don’t feel so sick all the time. I still can’t do anything more, but at least I feel better. Dr. Valley said that the improvements will be extremely slow and gradual. His rule of thumb is 3 months of recovery time for every year of illness. For the math-challenged, that means that it’s going to take 3 YEARS for me to recover to whatever level of functionality I can achieve. Good thing I know all about being patient, having spent 12 years waiting for a diagnosis!
So, after 12 years of “no” I finally got a “yes.” I finally have hope. I no longer have to fear that I’ll just continue to deteriorate until I’m bedridden. I no longer have to keep struggling to find a doctor or a treatment. I can finally look at the future and see a better life. No, it won’t be the life I had hoped for (I truly planned to be racing bikes into my 70’s) but it will be a better life than I have right now - and that’s HUGE. Thank God for a YES!!
