So here I was with a prescription to go to another doctor and still no closer to finding out the cause the headaches or shaking. The new year had started and my shaking seem to have subsided a little bit. My headaches were all but gone so I figured it was Christmas stress and all was good. I put off calling the doctor, my business was picking up, and I was busy with kids. Besides, Rick didn't have insurance with his work and we really couldn't afford all these visits. (Excuses, excuses, excuses)
January came and went. February began, and I noticed my vision started doing funny things. I'd see what looked like a rain drop out of the side of my eye. I would turn my head or blink and it'd be gone. Hmm... Strange. When I'd look out our big picture window of our apartment, it would be several water spots. Dang, filthy window! Winter was messing things up. I scrubbed the window inside and out. The spots came and went. I blamed the kids and their fingerprints. When I was driving, I thought it was my glasses or the windshield. I washed both.
This scared me and I finally decided to call the neurologist and make an appointment. Surely, a visit with him couldn't cost that much. It was a good thing I called when I did; he was booked out into March.
In March, Rick got a new job and with it health insurance. I would be covered for my appointment with the neurologist in a few weeks. Even this first appointment was going to cost us a pretty penny.
I remember walking into his office that first early spring day: calming browns and tans; soft seats with large fake trees in the corners of the room, tables here and there with reading materials; and large rectangle, floor-length windows that let in the sunlight. The reception desk was directly across from the door and the elderly receptionist smiled brightly, "You must be Brenda."
The few patients in there looked up at me and went back to their reading. I tripped over my feet and mumbled a yes as I went up to the open desk. The grey-haired, happy-camper rattled off everything she would need, gave me five forms to be filled out in triplicate, and waved her bejeweled-hand and telling me to be seated anywhere. I would be called back shortly.
This was to be the first of many trips to doctors' offices where I would have to fill out many, many forms asking me everything from what my grandparents' health was to what I am allergic to to what my health history is to you name it. The forms give me about one inch to fill everything out on and the doctor's office gives me about 10 minutes to do it in. At this particular appointment, I was able to do it in about 5 minutes and fit it in the space given. Now, it'd take me about 30 minutes, and there is NO WAY on God's green earth, I could fit it on ten 1" lines. I learned many years ago to keep all my medicines, surgeries, hospital visits, health history, allergies, etc., on a computer sheet that's updated frequently. I run a copy off before each visit and attach it to these forms with the words in the 1" line See Attached Sheet. Saves time and headache for all involved.
When I was finally called back to see Dr. So & So, I went through all the embarrassing tests I had to do with Dr. Clinic plus a few more on the extensive list I lined out for you on the previous blog. He actually used a sharper tool than a toothpick and ran it up the length of my foot. He also held up a red Sharpie pen and asked me how bright the color was. In comparison to what? Really what was he trying to get at?
He stopped and scribbled a bunch of notes down, made a few grumbling noises, left, and a nurse came back in. She took my vitals. She left and I was alone, freezing and wondering if I could put my shoes and socks back on. After what seemed an eternity, he came back and told me I'd need to come back in six days for an EEG. I'd have to be sleep-impaired for this and needed to get up at 2 am the morning of the appointment-no caffeine, no naps the day before, and no chocolate. http://www.mayoclinic.com/health/eeg/MY00296
The day of the appointment, I was dragging. I felt like telling Dr. So & So he should try having two active toddlers and be sleep-deprived. My husband took the day off work and drove me. It was all I could do to stay awake.
When I got there, I was hooked up to many electrodes and told I could NOT move for the duration of the test, which was about 20 minutes. And of course, being told that, immediately my nose, my ears or something, started to itch. I tried to use my meditation techniques from pregnancy to keep from moving and scratching the persistent itches.
Just when I thought I was done, the technician came back in and told me they had to run another test. I decided I would just go to sleep. I couldn't take it anymore. But then, I was asked questions and there were flashing lights. By the time the test was finished, I was exhausted.
It was several days after the EEG when I received a call from the bubbly receptionist. She had made an appointment for me to have an MRI for 10 days out. Dr. So and So was on vacation and he would like see me mid-April with the results of the MRI. Would that be OK? Really?! What was I suppose to say? No, get him off of vacation. I want my results now.
Ten days would put us into April. Time was ticking, and I was no where near a solution. Nobody told me what I had. Nobody said what they were looking for. Technicians, nurses, or the doctor said nothing. By now every family member was asking if we knew anything. All we could say was, "No, not yet. Just more tests. More follow-ups."
April came and so did the MRI. I'd never had one before. I wasn't claustrophobic so that part didn't bother me. I found it rather curious with all the banging, knocking and rattling. Mid-way through the procedure, I was rolled out of the tube and injected with a blue dye in my veins. All in all, it took a little over an hour of freezing in the sterile tube. http://www.mayoclinic.com/health/mri/MY00227.
Mid-April arrived and with it my much-awaited appointment. I went by myself this time. I sat across from Dr. So & So as he shuffled his notes.
"Well, we can rule out, blah, blah, blah." I didn't understand any of his terminology. "But, I have it narrowed down to three things that will need further testing."
I figured out by now pills weren't going to do the trick. Bummer!
"Yes?" I was hoping to spur him on. I didn't want to leave my kids with the babysitter too long.
He must have decided to get it over with because he said quite bluntly, "You either have a brain tumor, Lou Gehrig's Disease, or MS. We will need to schedule you a lumbar puncture. That will rule out a few of them."
http://www.mayoclinic.com/health/amyotrophic-lateral-sclerosis/DS00359
He must of seen the look of shock on my face and realized he had been rude. "Let's hope you have MS. It isn't always fatal."
Keep digging, Doc. You're making your hole deeper.
At the beginning of May, I went in for my lumbar puncture. This one I was worried about. I had to hold perfectly still while the performing doctor inserted this needle deep into my spine. I was on my stomach the whole time and got to watch the procedure through the monitor. It was fascinating.
http://www.mayoclinic.com/health/lumbar-puncture/MY00982
Afterward, the assistant rolled me out on the gurney, still on my stomach, and told me the dressing rooms were full and it'd be a while before I'd get in to change. 'Sit back, relax, and enjoy the atmosphere.' Right. White, sterile halls with orderlies rushing every-which-way; the intercom dinging now and then calling to this doctor or that; an occasional patient being pushed by for a surgery; freezing air being funneled in from the air vent directly over-headed; and me, left there on my stomach in a gown that was too small and tide in the back. I had to stay laying down for 24-hours to keep headaches at bay.
I remember it like it was yesterday. I, also, remember my appointment with Dr. So & So on May 16, 1996. The day before our 6th anniversary. It was the day everyone I knew, religious or otherwise, had been praying for an answer and a miracle. I was just praying not to die. I had two small children I didn't want to leave behind.
He looked at me and smiled. "Great news! You have MS."
OK...I wasn't going to die. But my aunt has MS and to me this wasn't great news.
"There are two kinds (at this time, that's what the grouping was)--Relapsing and Remitting and Progressive. So what do you think your symptoms have been? Getting worse steadily or getting better?"
Now, you should know, this doctor really didn't know much about MS other than the basic definition. I knew nothing of MS other than my aunt had it and she wasn't doing well. I also knew I had a few symptoms and to me they seemed to be getting worse and lasting forever. That is what I told him.
"I guess you have Progressive. Which means you'll just continue to get worse and worse until you're paralyzed or die. So sorry. "
I was stunned. My husband and two beautiful children were out in the lobby waiting to leave for our long trip to Great Falls, MT, and here I was with the horrible news I had to break Rick.
"I can't help you any further. I recommend you go to the University Hospital where they have a great MS Clinic. Prof. Garden. can take care of you. He is fantastic."
He gave me the card for the clinic at the university and I stumbled out to the lobby. Rick took one look at me and shooed the kids out to the waiting van. I whispered a small explanation to him as I buckled myself into my seat.
The ten-hour ride to my parents' house in Montana was the longest ride of my life. I cried. I was angry. I was scared. I was mad at God. I wondered what I did to make Him made at me. I kept thinking of all the things I had left to do. Somewhere along the way, Rick called my parents and gave them the news. He quietly told me my aunt would be there to help me with any information on MS I wanted. It was at this point I quit thinking about myself and got angry again. I went into a cold, icy silence.
How dare she swoop in on my misery and try to become my friend?!
* * *
(to be continued)
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