Tests, Tests, Tests, and Good, Better, Best

I met with the Neurologist yesterday, and just as we thought, he thinks as well that it could be myasthenia gravis.... but to confirm it we needed to do a lot of different tests, so as soon as I was done with him at Timpanogos Hospital we went straight down to Utah Valley Regional Hospital to start the tests. The tests are really interesting so I thought I might do a little run down on each of them as I go through out the last 2 days.

The first was the CT Scan: this scan was actually kinda funny, I could not help but laugh a little while it was happening, and I have laughed a lot about it since. The CT Scan I needed was to check my thymus gland... from what I have studied and been told, the thymus gland is part of the autoimmune system and it creates an antibody called acetecholine.... when you are a child you have a large thymus, but as you get older your thymus gets smaller and eventually turns into fat. In people with myasthenia gravis the thymus stays large and the antibodies it creates starts to attack the receptors that go between the nerves and the muscles. So back to the test, since it is to check the thymus they had to do the CT scan with contrast (I thought it would be like the contrast that I had with the MRI, but it was not!). The technician got me onto the bed which was then raised up and he put an IV into my arm... they pumped me full of saline and did a couple of runs through the machine (which looks like a giant donut). The bed goes through the donut and the machine tells you when you can breathe and when you need to hold your breathe.... there is also a funny little light to tell you. Then he told me what it would feel like when they put in the contrast.... here is how it went: first you will feel warm in your hands and your head and your heart and then you will feel like you peed your pants, but don't worry because you didn't. I did not think that it would actually feel like that, but sure enough as the contrast went in my hands started to feel warm and then my head and then my heart, and then it REALLY REALLY did feel like you peed your pants for about 4 minutes. I was having such a hard time not laughing, but I had to remind myself to sit very still so I would not have to do it again. Then the technician came in and we got to talking, I told him how much it felt like I had peed my pants and he said the best part of his job is getting to watch people check... I laughed about that so hard because that is SO something I was about to do.... and something that if I had his job would love doing. So with the CT Scan they are checking for a large thymus and also tumors on the thymus. Is it bad that I kinda am hoping for a tumor? I only say that because then they could remove it and in a few years I would be fine. With myasthenia gravis there is no cure, and treatment is only to reduce symptoms so pretty much this is something I might have for the rest of my life (I am still hoping that ALL the tests come back negative and that it is just a really expensive nothing). 15% of people with myasthenia gravis have tumors... almost ALL of those are non-cancerous.

After that we went to get the 6 tests of blood work done, but some of the tests have to be sent to other hospitals to be read because they are so rare, and we missed the UPS guy by 5 minutes! So that test had to be done today. We went home where my amazing mother-in-law and sister-in-law were watching the kids, and then they took them over night again... that was SUCH a HUGE help because testing this morning started at 6:45.

Which brings us to today. Test number 2 (number one for today) started bright and early at Timpanogos Hospital, it was the nerve and muscle stress tests. This was the weirdest of ALL the tests I have done. First was the nerve tests. The doctor measured and marked places on my hands and arms and then did a mixture of acupuncture and electro shock therapy. He would put a little needle in somewhere, not even one of the places he had marked and then he would put an electric probe on the places he marked and send an electronic pulse through that would trigger different reflexes, it would be measured in waves on a screen. He did it several times on multiple places in both of my arms and face... the hardest part about this for me was switching sides because it meant having to sit up and move. It felt weird, but I have been electrocuted so many times before with switching out light fixtures that it was not a surprise for me. Next was the muscle stress tests, and with this one I was not sure exactly how they did it. They put a jelly on me and then covered it up with the little sticker type things, just like if you were getting an ultrasound, but then they did a really painful tapping, at first they just did singular taps and then in a rhythm of 5 for a couple times. He said he would do it in 2 places in my arm and then 2 places on my face. When they did the ones on my face it was right up by my eyes, and it hurt pretty bad, especially when they did the periods of 5 consecutive taps. He said he was getting some interesting readings and he felt bad but he would need to do it in a third place on my face. Then he asked me which side of my face drooped more and when I told him it was the right, we had to do the test on my face on the right side as well. So instead of 2 on my face we did 5 on my face. I am glad that test is over, even though to me it was the most interesting (other than feeling like I had peed my pants). They did this test to make sure that my nerves and muscles are still communicating, it is another way to see if this could be myasthenia gravis.

After that we went home and rested for a half hour and then went down to Utah Valley Regional Hospital for the blood test and the pulmonary heart test (breathing test). The blood test was pretty typical, but they tested a lot of things, some of them the techs had never even heard of before, they were not even on the list, so the tests had to be written to the side along with what color test tube they needed to be in. They did 2 thyroid tests and anti-thyroid tests, along with an acetecholine test and something called an Anti Musk test (that was the one that everyone seemed a bit baffled by). I have great veins so this was not a big deal for me at all (everyone really seems to appreciate my great veins, so that is something I am learning to appreciate about myself as well).

The last test was the Pulmonary Heart test. I did not know what this one was going to be... I knew it was because I had been having episodes where it was really hard to breathe, but I was not sure what it would be like. They brought me and Don into a small room where there was an even smaller glass box with a chair in it and a breathing machine. They had me sit down (I feel bad because I think the doctor wanted me tested while I was having an episode, but the test was done while I could breathe normally) and first had me breathe into the machine normally, then they had me take a REALLY deep breathe and then had me release ALL the air, they did this test a couple of times. We could see the machine reading my breathing.... the good news with this is that my breathing is beyond perfectly healthy. I am able to breathe in 130% of the average person, and breathe out 124%. I guess when I breathe out all the air there was a hiccup at the bottom where it would bottom out stay there and then a few seconds later get lower. The respiratory therapist asked if there was something there preventing me from breathing out, and Don and I both looked at him and said no, it is just because I am a fighter.... I hope that I can say that is true, that when things get to their lowest I can find a way to push harder. Then they did the same test but when I breathed in I breathed in a gas and had to hold it there for 5 seconds before I could release it... this one was actually hard because even though I had filled my lungs to capacity and was holding my breath the gas was still blowing into my mouth.... this test was to measure how much air was getting into my blood to make sure everything was okay. I came in at 97% on that one. The best part about this test was the respiratory therapist, he made it fun. I think he could totally work at Disneyland because he made me feel like I was bout to take the best ride of my life by breathing into this funny machine in this tiny glass box (which was never closed, happy day).

So those were the tests, we have an appointment with Neurologist again tomorrow to go over the test results and hopefully finally have a diagnosis.

Now for the Good, Better, Best. First the Good... I am able to breathe normally, even better than 100%. One of the scariest things about myasthenia gravis is when it effects the muscles in your lungs... some people have to be on respirators, hospitalized, or it can be fatal.... I am thankful that this is something I am not dealing with now, and hope that since my lungs and breathing are SO healthy that this is something I won't have to deal with later. I am grateful for my small episodes, even though they are a bit hard and when they get bad they can be pretty scary, but they go away... I think that is very good!

Better, with ALL the tests we have been going through, and all the other recent financial expenses we have had (cough* cough* new car) I was really nervous about how much the tests would be out of pocket while we are waiting to hear back from the insurance we are trying to enroll in... The CT scan, blood test and pulmonary heart tests, since all done at Utah Valley Regional was only $50! (with bills to come later) but still I count that as a HUGE blessing!

And finally Best.... when Don and I went to go get my prescription filled we found mint m&m's!!!! If you know me, you know that Christmas is my favorite time of the year almost solely because of mint m&m's (not really but I do love those little pieces of heaven).... My mom thinks I have my good better and best in reverse order, but to me right now it is the little things that make me smile, like feeling like I wet my pants, a fun respiratory therapist and mint m&m's.

I am also grateful to be living where we are because I am only 1 mile away from Timpanogos Hospital and only like 4 miles away from Utah Valley Regional Hospital... the Lord definitely has a plan for us, including a time where he wants us to be specific places, and right now I know we are in the right place.

Sorry for any spelling or grammar mistakes...this was done without my eye patch, and I am a bit tired... off to sleep I go.