Hello, I'm Cheyanne. I'm subbing for Tana. (: I am 14 and live in the sunny state of Florida. I have been diagnosed with POTS since December of 2010. The cause is unknown. I'm looking forward to getting to know all of you. It is nice to have other people my age that I can relate to.
All of this week and last week I have been going to doctor appointments. They had done a CT scan and had found mucus plugs and scarring on my lungs. We had no clue on how I would have scarring there. So that doctor sent me to a pulmonologist. I saw her yesterday and she did an x-ray and another breathing test that I have the tendency to pass out during. Luckily I did not. When they looked at the x-ray my lungs looked fine. So the poor doctor was kind of confused. Thank God there is nothing wrong with my lungs now.
We have been trying to rule anything and everything out that may have caused my POTS. My ANA titers came back and I have no autoimmune diseases (i.e. lupus, rheumatoid arthritis, etc.) The only other thing it could really be is a mitochondrial disease or Ehlers Danlos Syndrome. I had the gardasilshot a few years ago. Afterwards I started experiencing mild symptoms. I am sure that played a role in causing the POTS, but I don't think we'll ever know.
I don't really know what questions to answer because this is my first time doing this, but I'm just going to answer all of the questions since last Wednesday.
Michelle's Question: What do you think is the hardest part about having a chronic illness?
I think the hardest part for me is not being able to hang out with my friends and constantly be on the go. I am one of those people that love to be busy and sitting at home all of the time has been very hard on me. Also another is not being able to play softball.
Hannah's Question: When (if) you have tremors, do your eyes roll, do you go “in and out” like your not there then you are, do you have trouble speaking, do you get dizzy and have weakness so bad you can’t walk after?
I do get tremors. Afterwards I feel a little weakness, but none of the other things happen. The other day I was watching tv with my mom and had gotten this terrible pain in my back that lasted a good 5 minutes and every time I would move it would come back. A few seconds later my arms started shaking uncontrollably and then the rest of my body did. I came to the conclusion it was a muscle spasm, followed by tremors.
Miranda's Question: Do you know any good recipes for liquid diets?
No I do not. I am very malnourished as well. I have a lot of the GI problems. At times I have gastroparesis and my stomach does not want to work and other times my IBS will act up. Then there are times where it wants to work normally. On days where I am really sick I just stick with really bland foods.
My Question: Do y'all get brain fog and how long does it last? I have been having some trouble with that. I am hoping that going back to school for one period will help my memory a little more.