Mayo Day 1

The Mayo Clinic is awe-inspiring. I mean, I don't expect them to heal me in the few days I'm here, but I have confidence that if anyone in the world can figure out what is going on...it'll be the guys here.

The clinic is just this huge (insanely large) building with 3 wings and 20 floors (including a Subway level which connects it with all the surrounding buildings). Each wing of each floor specializes in something. So when I checked in this morning with the receptionist at internal medicine, I was in the system. By the time I had finished giving my history to the doctor a couple of hours later, I had my itinerary for the day. They just printed it for me and I went from floor to floor getting labs and tests. When I got to a reception desk and told them my name, I was already in the computer and on the schedule. It was so efficient. *sigh* If only all healthcare facilities could see how this place runs....I'm swooning at the organization. LOL

I spoke to my coordinating physician this morning and he has referred me to several specialists which I will see as soon as they are available. He also ordered several tests, labs, etc. Once I have seen everyone and done everything he has asked me to, then we will meet again to reevaluate. He gave me the basic initial reaction I've had from all my doctors: this is a complex case that may or may not have myasthenic properties due to the facts that I don't have the classic MG symptoms and am not responding well to aggressive MG treatments. He did add, however, that their goal is not to treat the symptoms so much as determine the underlying cause for them. I appreciate that--that's what I want, too. Find the cause and fix that, and hopefully the resulting symptoms will resolve themselves.

Overall, I am very impressed with this facility and hope for the best. :) If we can make progress, these doctors will be my new heroes.

The story part 3

So, we wait, and we wait, and life is pretty miserable about now, but we wait some more...

3 weeks later and still no change. Same symptoms and now I'm getting consistently more tired all the time.

It just so happens that I have an amazing Family Doctor. I went to see him and he was so concerned and spent so much time trying to help (as a matter of fact, he's been with me this whole time, still is my doctor, actually). We finally decide that in order to run all the test he wants to run, we'd be a lot more efficient if I were admitted to the hospital.

So, here we are, mid-September, and I am now officially on a leave of absence from work and in the hospital. *At this point, I have so much faith in my doctors and the practice of medicine that I'm POSITIVE something will be found. I'm extremely confident that this would be the start of the end of my troubles.

They run every test imaginable. I had MRI and cat-scans of the head and brain, the back, the abdomen. I had so much blood work that they used up all my veins they could access and put in a PICC line for the duration of my stay. I had spinal taps and all kinds of uncomfortable neurological tests where they stick needles in you and shock you with electrodes. I had swallowing tests and physical therapy tests. If you can think of a diagnostic test, I had it. I had ultrasounds of the abdomen and heart. And the list goes on.

I spoke to a nutritionist and an immunologist and an infection diseases doctor (because EVERYONE that knew I went to the Philippines just insisted that it was a bug I picked up over there). I had a neurologist and a cardiologist and a radiologist. I had the largest team of doctors that I could have ever imagined.

And guess what? every test was normal. Every one. No one could find anything wrong...except the eye doctor, and it was pretty obvious that my pupils were dilated and unresponsive. But everyone kept saying they'd never seen anything like it. No idea what was going on, etc. They did, however, tell me that my eyes would never recover because they were dilated because the nerves were damaged. Too bad. GAH! I was devastated! How do you so callously tell a previously-healthy 25 yr. old that her vision is impaired for life? Jerk.

Well, the next step, after a full week in the hospital and no answers was to head to the University of Alabama in Birmingham to see a Neuro-Ophthalmologist who might be able to help. This trip was gonna be fun, though, because UAB wasn't in-network with my insurance.

The story part 2

The next step was to see my optometrist--I mean, my eyes weren't focusing, right? Tests were mostly okay...my pupils were a little sluggish to respond to light, but nothing to worry about. I also had a test that showed maybe some slight neurological anomalies, but, again, nothing to worry about.

So, I'm off to see a neurologist in Enterprise. Well, 15 minutes with this, this, JERK and he says it's all in my head...did I want to see a psychologist? Well, fine, then. Um, no--to the psychologist.

Well, by this point, all my running around is doing is costing me money. No answers. No help. So, for a while, I just trudge along as best I can. In addition to the dry mouth and dry eyes, I am not really able to digest food...everything just gets stuck in my esophagus or intestines. I am more constipated than I have ever been in my life (sorry for the ickiness...just the truth). And things just get worse.

Then, one day in late August, I wake up and realize that I can't see very well...I look in the mirror and my eyes are dilated and fixed. No response to stimulation. So everything is fuzzy and I am overly sensitive to light. At this point, my whole family is terrified...what is going on?

We run in to see an ophthalmologist--since my last run-in with an optometrist was a bust--and it takes him about 10 seconds of looking in my eyes and listening to my symptoms to tell me that I've ingested some kind of poison. My body systems are slowing down and it's because I've been exposed to something toxic. Don't worry, he says...in 10-14 days, you should be fine.

Whew! What a relief!