MY 9-MONTH JOURNEY TO DIAGNOSIS
While on holiday in Whistler, I wake up in middle of night sick. Vomiting, diarrhea and general malaise. In the morning, I have a weird rash on my lower face, across my chin.
I feel somewhat better as the day progresses, but in the week that follows, I continue to have this vague feeling of uneasiness or malaise and begin to feel extremely tired and worn out.
I figure that maybe I am just tired out due to our long five-week road trip we’ve just come back from.
Hit Robert’s Creek on the sunshine coast for vacation, one week after being in Whistler. I continue to be very tired out and am also very moody. Try to go for a run but my get up and go got up and left. During our week in Robert’s Creek, I begin to have really bad, unrelenting headaches and an incredibly stiff and sore neck and collarbone area. Once again, I chalk it up to all the traveling that we have been doing.
I continue to feel progressively worse throughout the month of August. I am now taking six to eight extra-strength Tylenol per day to cope with the headaches and neck pain but am getting little relief. I am no longer able to sleep. I have developed insomnia, it seems. And my memory seems to be playing tricks on me too--I have now shown up to several dental appointments at the wrong time on the wrong day. For example, the appointment is for the 21st but I show up on the 12th, despite having written it down correctly in my planner.
I am hallucinating at night. Strange aberrations appearing before me. I am awake, am I not? They are so life-like. I blink and blink and stare into the darkness and still they remain, taunting me.
I am experiencing drenching night sweats too. Gross. Have to get up and change the sheets on many nights. They are sopping wet.
By now the pain has moved into my jaw and down my back. Maybe I am stressed out and am grinding my teeth at night? Weird. The pain in my neck and collarbone is intense. I can’t exercise anymore. I can’t even carry a purse as the pain radiates all across my upper body and down my back. Aching. Sharp. Biting. Electric-like charges coursing down my extremities.
Go see the chiropractor. All this traveling must have really done a number on my body.
“No, you're not out of alignment enough to have such intense pain. I can tell that your whole nervous system is tweaking out. Go see your doctor.”
Go see my family doctor. Maybe it’s chronic fatigue back again? Maybe a virus. Maybe stress.
"You are sure you are not depressed? Here’s a prescription for muscle relaxants and sleeping pills. I’m sure things will resolve once you can get back into a good sleep pattern. I’ll send you for blood work. Take the sleeping pills and muscle relaxants and I’ll see you back here in a month."
Tried muscle relaxants. They do nothing for the pain. Sleeping pills are useless too. Back to the chiropractor for another adjustment. I’m starting to feel very scared. Maybe I have MS or a spinal tumor? I burst into tears in his office. How embarrassing. So totally unlike me.
"I doubt it’s a tumor. Maybe you just have some emotional baggage that is resurfacing."
You have got to be kidding me!
Shortly after my first visit to my family doctor. I begin to experience episodes of my heart racing, palpitating wildly. Can’t control it. What is wrong with me?
Back to the doctor.
She sends me for an ECG--everything normal. Small comfort. I who have always been so in tune to my body, now find it hardly recognizable. And now I am having numb sensations flitting about up and down my right calf and across my face and neck. Back to my family doctor.
I’ve now begun compiling a list of my symptoms because I seem to forget so much as of late. I’ve always had a penchant for details and thoroughness. My doctor looks at my symptom list and suggests the possibility of MS.
An appointment is made for November 10, 2006 with a neurologist at clinic for MS. September melds into October 2006. Old symptoms wax and wane, new symptoms continue to develop.
I keep "seeing" things out of the corner of my eye, but when I turn my head there is nothing there. And I can no longer count. Can’t remember what number I’ve just said. I can’t cash out at work. Was that four dimes or six dimes I just counted? Forget making a pot of coffee, too. And the floaters are horrendous. Did I mention my eye has begun to twitch nonstop, night and day? And my neck and head keep tweaking and twitching.
I am now having to repeatedly ask my kids the same questions over and over. "What would you like for lunch?" "Ham sandwich." "Hey guys. What would you like for lunch?” "You already asked us that, mom.” “I did?” “Sorry, I don’t remember. What did you want again?" "Ham sandwich."
Meet with neurologist. He schedules me for an MRI for December 2, 2006. In the meantime, my hair has started to fall out. Gross. Big handfuls. It’s everywhere. I’ve lost eight pounds in the last two weeks. Pain has moved into my hands. The veins swell to such astronomical proportions, that my whole hand begins to take on a bluish-black hue. I am freezing cold all the time and I shake uncontrollably. It is never ceasing. I can’t get warm. I have taken to wearing my 3/4-length down filled coat around the house. But it does little to keep the cold at bay. I’ve always been hot at night and had to sleep with a window open--now I can’t seem to wear enough layers, or pile on enough blankets to keep warm.
I begin to monitor my body temp. It is always low. Maybe I have a thyroid issue? Back to family doctor. "I’ve already tested you for thyroid issues." "Well, test me again." "No way."
THE ONLY THING NORMAL IN MY LIFE ANYMORE IS MY TEST RESULTS.
How ironic. And, no, I am most certainly sure that I am not depressed, doctor.
I have terrible noise sensitivities and visual sensitivities too. I even had to remove the artwork from my living room walls. Looking at it was driving me crazy! My world and my brain is so foggy now, like viewing life behind a heavily shrouded veil. Yet sounds are so intensely ear splitting that I must leave the room, for fear my ear drums will implode or I will go nuts listening to it.
My eye still hasn’t stopped twitching. And my whole body burns, and pricks like pins and needles--that sensation one gets when your leg falls asleep, yet my whole body feels that way. The pain is unbearable, unrelenting in my collarbone and neck. Sharp, arthritic-like pain.
Part 2 Friday.