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MY 9-MONTH JOURNEY TO DIAGNOSIS

Posted Apr 12 2007 12:00am
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/ worn out.

I figure that maybe I am just tired out due to our big, long 5 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, really bad and 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 6-8 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 (e.g. appointment is for the 21st but show up on the 12, in spite 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.

SEPTEMBER 2006
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 Rx 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 a 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. Well and 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 10/06 with a neurologist at a MS clinic - 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 4 dimes or 6 dimes that 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/head keep tweaking and twitching.

I am now having to repeatedly ask the same questions over and over kids.

"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."



NOVEMBER 2006
Meet with neurologist. He schedules me for an MRI for December 2/06. In the meantime, my hair has now started to fall out. Gross. Big handfuls. It’s everywhere. I’ve lost 8 pounds in the last 2 weeks. Pain has moved into my hands now too. The veins swell to such astronomical proportions, that my whole hand begins to take on a bluish, black hue. And now 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 3/4length 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 nor 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 go so far as 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 and yet sounds are so intensely loud and ear splitting, that I must leave the room, for fear my ear drums will implode or I will go nuts listening to it.

And my eye still hasn’t stopped twitching. And my whole body burns, and pricks like pins and needles – that sensation one gets when you leg falls asleep, yet my whole body feels that way. The pain is unbearable, unrelenting in my collarbone and neck. Sharp, arthritic-like pain.

DECEMBER 2006
MRI results are in. I meet with my neurologist. I do not have MS. That is good news. A relief. But what is it then, this mysterious anomaly, this cavalcade of symptoms, that are slowly taking over my life and radically altering my ability to do the simplest of tasks? I have been continuing to track them.

Here, Mr. Dr. Neurologist, here is my list again. He briefly peruses it.

"Oh, they are just too vague and non-related to mean anything."

"WHAT? Hold on a minute, if these symptoms are so vague how come they are interfering with my ability to live my life?"

"Well, I am concerned about a couple of your complaints. Your weight loss, night sweats and migraine. I’m going to advise your family doctor to test you for Lupus, Skeletal Rheumatoid Arthritis."

Back to my family doctor.

Chest x-rays. Abdominal ultrasounds. Another round of endless blood tests. My bones ache and ache. I am in so much pain. My brain has turned to mush. I can’t bear to even hold hands with my daughter. And more than a sheet over my body at night causes great pain and discomfort. Maybe it is rheumatoid arthritis. Maybe it is bone cancer.

"I’m sending you for a bone scan."

Off for the bone scan on December 22/06. Back to the family doc. She plays the "Are you sure you are not depressed?" card again.

"Maybe you should go see a psychiatrist. Here’s a referral."

Fine. I’d be happy to go just to prove that I am not depressed or crazy for that matter.

JANUARY 2007
"Please send me to a Rheumatologist. Doc, I have such terrible arthritis pain. Maybe what I have is Fibromyalgia. Perhaps a Rheumatologist can give me some life-style suggestions for controlling/dealing with the pain."

"You don’t have fibro, Shannon. And your bone scan was normal. So you don’t have rheumatoid arthritis. Your blood test shows you have no inflammation in your system but if you insist, I will refer you to a Rheumatologist - but I doubt he will even see you."

Off to see the Rheumatologist accompanied by my ever-growing symptom list. Of course, Murphy’s Law prevails and my arthritic symptoms have waned just in time for this appointment.

"Shannon, there's no way you have fibro. You don’t have the personality for it."

I say pardon? Really! Where do statements like this come from? I didn’t know diseases were assigned personalities. Dr. Specialist continues to wax eloquent...

"I’d say that you’ve probably just ‘hit a rut’. You seem like a highly motivated individual. I’m sure you’ll pull yourself out of it."

What a complete waste of time. Ever been given a pep-talk by a pompous, arrogant know-it-all?

"No no! Doctor, you don't understand. I used to run 8 km a day and weight train 1hour every day. I WANT to do that, I have the DESIRE to do it but I can not PHYSICALLY do it because I am in such tremendous pain!"

"I’m sure your pain is real for you."

OK, flippant comments like that are not helpful, not professional, and are extremely irritating.

I'm shutting up now, and am going to sit here and smile and nod until you finish your pointless pep-talk and then with my dignity barely intact, I will march my aching body and my non-existent life out of here.

My condition is benign, according to his expert opinion.

MARCH 2007
And I will not book that appointment with the psychiatrist. Not interested in wasting my time, or his time. I KNOW my problems are not imagined. But I don't have the emotional or physical stamina to deal with anymore doctor's visits anymore. I am tired of trying to make them believe that there is something very physiologically wrong with me. I give up. I can't keep trying to figure this out anymore.

My husband talks about my health issues to our surgeon friend in Ontario. He asks many questions. I think I know what might be happening with her, but let me do a little digging and I’ll call you back.

Phone rings 3 days later.

"I’ve been checking into Shannon’s symptoms and I believe she may has Lyme disease."

"What is Lyme disease? Isn’t that something you get from a tick bite?"

That can’t be me. I’m a city girl not a nature girl. My idea of gardening is stuffing my artificial Christmas tree into a decorative garden urn full of dirt.

I Google Lyme Disease.

And lo, there is my symptom list! Every single last one my symptoms is listed before my eyes. How is it possible that every doctor I have seen over the past nine months have missed this? One would think this is so obvious. Every last one of the symptoms that I have experienced is listed as a symptom of Lyme disease. In fact, by the time I receive my clinical diagnosis of Lyme disease, I present with 57 of the 75 symptoms listed on a diagnostic check list.

"Hey family Doctor - I'm back! Listen to this: Our surgeon friend thinks I may have Lyme disease."

To my relief, she is open to the suggestion. For she is just as frustrated as us with my perplexing medical situation.

"Hmm, sometimes all it takes is a fresh set of eyes. I’ve recently had another patient happen across a doctor in Hope who seems to be knowledgeable in this area. It might be helpful for you to see him, so I am going to refer you to him, as well. His practice is out in Hope. So, let’s hope for hope in Hope. And in the interim, I will send you for a Lyme test. But just so you know, in 20 years, I have never had anyone test ‘positive’."

Ah yes, the great test debate that I have been reading about. Upon my own investigation into this disease, I find a plethora of information on the importance of diagnosing Lyme based on clinical presentation as opposed to serological (CSI type evidence) tests and results. The tests are known to be highly unreliable and insensitive. But in general, clinicians have no clue about this, and and so rule out a positive diagnosis when the test comes back negative - even with the presence of symptoms!

Even the CDC has gone on record stating,“that commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.”

Furthermore, how is it that we in BC are still so misinformed about the symptoms and the need for a clinical diagnosis of Lyme disease? In fact, clinicians seem to be woefully unaware or unwilling to even acknowledge the prevalence of Lyme disease in this province?

Basically, that ignorance has cost me 9 months of my life.

APRIL 2007

I go for my Lyme test and wait to hear from this doctor in Hope. I am contacted the next day and am given an appointment with Dr. M for April 11/07. Dr. M was the first doctor who asked me what my quality of life was.

“What life?”

And then he asked me to assign a percentage to it.

"I don’t think to say that it is about 30% of what it used to be would be an exaggeration."

Both my husband and I responded together. We looked at each other. We were both struck by that. We knew that our life had been radically altered because of my illness and that we no longer functioned ‘normally’ anymore - but to have it assigned to a number was a rather dismal eye-opener. To finally have a medical professional acknowledge this loss as real and significant is a profound relief.

Dr. M then proceeded to take a thorough health history and physical exam. Our first appointment with him lasts well over an hour. At the end of it, he clinically diagnosis' me with Lyme Disease. He says he is willing to treat me.

We are dumbfounded. There is really no sense of relief. With diagnosis comes the reality that I now face an uphill battle to restore my health as this insidious disease has had 9 months to take up residence in my defenseless body.

However, we are buoyed by the knowledge that at least we finally know what it is that has so radically altered our life and now armed with this knowledge, we can wage war on it and begin getting our life back.
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