Saturday, October 24, 2009


So the next step tp diagnosis is the hated Testing. This can include MRI's, CAT scans, wires and needles, and maybe even a spinal tap (ouchies). The only sure way to diagnose MS is to have a spinal tap, or to moniter a patient with MRI's over the course of years. The docs look for a certain pattern with the lesions on your brain. But just like the English language, there are many "exceptions" to this pattern. I'm an exception apparently. I really don't know how or why except that the lesions on my brain do not follow the exact pattern for diagnosis, but the number of them and their placement still scream "MS MS MS". It would be so much easier if the docs could just dumb this stuff down for us simple folk.

The testing phase really sucks. It's the worst part. You don't know what's wrong with you, and the docs are great at scaring you with "worst case scenario" crap, when their not looking at you funny like maybe your just faking everything. I hated the MRI's, but they were not so bad until they started sticking me with needles. They injected me with something to "help get a clearer image". It left my mouth tasting like I sucked on a penny all day. At first I learned to just doze in the machine. I even got used to the jackhammer noises going around my head. They brace your neck so you won't accidentally move so you don't even have to worry about keeping still. Next thing I know I get yanked out thinking it's all over, and while still braced in, they stuck me with a needle! No warning! Meanies >.> Some of the technisions don't have the greatest bedside manner either. Then there's all the bloodwork that has to be done. That's not much fun either. On the plus side, the nurses at the blood lab were super friendly and had lots of pictures of their cats. I can get along with anyone who likes cats! I've had so many needles that they really don't bother me much anymore.

Another part of the testing that really sucked was knowing my Mom was worried sick. What could she do but be there for me? I do have a little but of advise for parents going through testing with their child. TREATS TREATS TREATS! For the first tests, if they are small, a small treat like ice cream afterwards is great. They get to spend some time with the parent and be rewarded for putting up with everything. For the scarier tests (example, spinal tap) a big treat is in store. Perhaps they get to pick out any toy they want at Toys R Us, or any movie they want to see plus dinner. Trust me, it really helps the testing process for us to know we just have to get this out of the way and then we have something fun to look forward to. I also wanted my Mom right there while they were doing the test. If they made her leave the room I did not cooperate very well. Just having her their to hold my hand or rub my back helped so much. I knew I wasn't alone. Of course the MRI is something you have to face alone. But there is a panic button incase it's too much.

My serious testing started when I was about 14. I was having the same vison problem, but frequently. One time I was standing waiting for the bus to go to school, and it was just gone. I couldn't see anything but green. I know green sounds weird, but it was green. I heard the bus whistling up the road, heard it stop, and felt my way around the front and up the stairs. I felt the seats to the back where I knew my boyfriend would be sitting and sat down. It was a full 5 minutes before I could see anything again, and then I vomited in the garbage can from the front of the bus. The bus driver offered to drop me off at home when he went back to start the public school run, but by the time we made it to my school I felt fine. This started to happen more frequently though and the docs started looking for a cause.

The testing got even more serious when I was about 17 and the tingling in my left arm started. I just had to move my head forward and down slightly and my left arm would tingle. After a month of this I went to my doc, and she sent me to a neurologist. By the time I had all the MRI's and tests required for the neurologist, the tingling had moved down my entire left side. I visited him in April, and by June my whole body was tingling. I felt like an electric fence was attacking me. It got so bad I didn't even have to put my head forward to bring it on, it was constant. I could not sit, stand, or lay down. I couldn't attend school, I cried during my English exam because I couldn't focus. Finally I called my neurologist in tears and he got me in the next day on his lunch break. Nice guy by the way. He wanted to hospitalize me until all the tests he wanted were completed, which I refused. So he started me on a medication usually prescribed for epileptic seizures, It was an anticonvulsant. That stuff made me so loopy. But loopy was better then getting attacked by that evil electric fence.

Then on June 29th, I found out my Dad had passed away. A month after that, my doc broke the news that I had MS and he was sending me to the neurologist at the MS clinic. He was surprised when I heaved a great sigh of relief and said 'MS? Is that all?" He had me believing I might have some sort of rare cancer with tumers on the ends of nerves that required surgery on my neck and I would be cripled etc... "worst case scenario". And he wondered why I was relieved to hear MS? Silly neurologist.

Testing sucks, it's scary, you have no idea what's going to happen to you or what is wrong with you. But it's worth it to know. Trust me it is. And although MS really sucks, you could have scary nerve cancer thing instead! At least MS is not fatal, and you can live a fairly normal life with it. You can even work if you want, although I wouldn't advise a job that requires much standing, driving, or physical effort.

No comments:

Post a Comment