Hey everyone I hope all is well. What a day! Today I had two appointments at MGH; one with a comprehensive Neurologist who deals with nerve pain, muscle, etc… and unfortunately I missed my second, because they were half an hour apart so I have to reschedule, but it was with a sleep disorder neurologist.
The Neurologist I saw today it going to do three tests. YAY more tests! He wants to do a skin biopsy, a EMG, and an AFT. He is checking my peripheral nervous system and my autonomic nervous system. Looking for many things for example; diabetes or pre-diabetes, sensory organs, blood vessels, and muscles. Then if he finds something he has to figure out what is causing this, the mysterious “underlying disease.” He also says, like my MS Neuro., that I am complex, and such a hard case I need a team of Doctor’s. So talk about a new journey, would this count? Just kidding…
I donated to the “Bio bank” today, for researchers conducting all different kinds of studies on neurology patients so I donated some blood. The great part, is that if they find anything extremely important, or something that is basically worth worrying about, they will call all the donators to ask if they would like to know. I may get lucky and find out my mystery disorder.
Regardless of my “other situations,” I still do have MS, and still not sure what kind. I made a comment today saying, “what if I was born with it or have had it a lot longer?” He said it’s possible and unknown most likely. It gets frustrating when you have basically, a mysterious disease or disorder that had to do with your brain, and not getting many answers because, “your case is complex.”
I clearly understand that I could be way worse off at the moment. There are horrible things happening all over the world all the time. A few of my family member’s are not doing very well at right now. Sometimes, I just need to get it out of my system, and be sick of wondering what the hell is going on, and I have children and a family to take care of.
I just hate being “the sick one,” or “having to rest a lot,” it’s starts to get old, honestly. I am at the point where I just want to say screw it, and move on with my life and just see what happens. At this point, if I didn’t have children, fantastic family, boyfriend, and people that care about me, I would say screw it! Luckily, I do have all these great wonderful amazing people on my life that make it all worth it.
So I will keep on trucking along and hopefully someday this will all get situated, but until then bring on the tests. Maybe my blood is some kind of cure, or new found disease or disorder that will make history. That would be kind of cool as long as it is curable and not deadly. 😉
Never give up! Not on your-self, family, friends and not even strangers. You never know how things will turn out. What if?