Okay, I have been seeing various specialists for 2 years now, and no one has any solid answers. I'm just being bumped around from doctor to doctor.
I currently have two different things that have yet to be diagnosed, but doctors disagree on whether the two conditions are related.
18 years old
105 pounds (high metabolism/daily exercise accounts for slimness)
Whenever I exercise (I do taekwondo, and I have been practicing tkd for 12 years, so it's been ruled out that I'm having an anxiety attack), my limbs get heavy and I can't keep up. I feel lethargic, and the other day, when this happened, I could not lift my arms above my head - they were that weak. Sometimes I get dark grey spots in front of my eyes, or if I'm really pushing the exercise, I will start getting greyness on the edge of my vision. Lately I have been dry gagging when I work too hard in the exercise.
Usually I sit out of class if I start gagging or have the limb fatigue, and the symptoms used to go away within a few minutes, so I'd go back to exercising. Lately, though, it's taking longer to fade away, and easier for it to come back once I start exercising.
One of my friends at the tkd school is a nurse, and she's been very concerned. She took my pulse during on of these episodes and said it was 'thready'. Others say that I get very pale when these symptoms happen.
Now, this only really happens when I exercise (not just tkd), but every once in a while, some symptoms will occur when I'm not. On these days, I feel fatigued and weak, and a little anxious (as in, for things that would not normally make me anxious, things I do every day). I usually get my exercise symptoms easier on days where this happens.
Ophthalmologist - because of the eye spots, I went to an eye specialist last year. He did not see anything wrong, and suggested ocular migraines.
Neurologists - visited one or two neurologists. They were unsure about what could cause it. One of them thought it might be cardiological in nature.
Cardiologists - Went to see two different cardiologists. The first one was a pediatric cardiologist, a year and a half ago. He ran an ECG, and concluded that there was nothing wrong with my heart. He said that it might be low blood pressure (though my blood pressure was normal when he took it), so I should eat more salt and drink more water. I have been, but symptoms are not getting better. The second cardiologist, who I saw two days ago, is concerned, and is running a few tests, including Stress, EKG, and Tilt tests. The stress test came out normal (I was hardly breathing heavy when they ended the test, though, and did not get past a fast walk on the treadmill. I'm planning to talk to the cardiologist about this), and so did the EKG. I have not yet done the Tilt table test.
Bloodwork - I have had bloodwork run for numerous possibilities, including diabetes, anemia, etc. They were negative, for the most part (I will explain the borderline-positives in the next part).
The second, possibly unrelated puzzle is my eye. A few weeks ago, my right eye went grey (after seeing bright little spots zipping around for about thirty seconds). When the greyness cleared, it left a little grey spot near the centre of my vision. I finished the night's exercise (I had been teaching a children's tkd class at the time it happened - and was doing no more than stretching. No trauma or heavy exercise precipitated it), and went to my primary doctor the next day. They sent my to the ER for more testing.
Okay, at first they thought it was ocular migraines, because of the visual disturbances, but they took blood tests and had an ophthalmologist resident look at it anyway. The ophthalmologist dilated my eyes, and did an ultrasound -and she found that I had haemorraging behind my retina. She called in her supervisor and he was just as puzzled/concerned.
I've since seen at least three different ophthalmologists about this. They're all equally confused about this - apparently, this type of haemorrage is only supposed to occur in elderly people, or in comatose patients, and I am neither. I had two smaller, deeper haemorrages and the bigger one. They have all gone away by now, but I still have no answers about the cause.
I am scheduled to go back to one ophthalmologist/neurologist in a few weeks for more tests.
The ER tested for some very strange things (according to the nurse who commented on it as she took my blood), and they all came back negative, except two, which were borderline-pos: ANA and C-Protein. I am scheduled to retake these tests in a few weeks.
I also went for an MRI, but as I still have braces, they could not see much of my brain or the hemorrhage. It is possible that I might go back in a month, after my braces come off, but the haemorrage has cleared up, so I don't see what help it would be.
Okay, I think I covered everything... it's a little hard to keep track of.
If you have any ideas, I'd really like to hear them. It's just been one specialist after another, and they're all confused, whether they think the two conditions are related or not (the ER doctors had a big discussion about that, and they all had different opinions).
Yeah, in general, hearing even one doctor say 'Wow... that's fascinating! I've never heard of anything like this!' is off-putting, but I've gotten to the point where I've heard it so many times that it's becoming white noise.
I am an extremely active person, and would not do well giving up strenuous exercise, as one nurse suggested.
I just really, really, would like a diagnosis, so I know what I'm dealing with. Thank you, for any suggestions or comments.