Discussions By Condition: I cannot get a diagnosis.

If you like medical puzzles...

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: aljanny
  • October 22, 2008
  • 03:14 PM

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.

Female
18 years old
5'3"
105 pounds (high metabolism/daily exercise accounts for slimness)

First:
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.
Specialists/Tests:
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).

Second:
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.

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8 Replies:

  • I don't have any answers for you, but your grasp of medicine is admirable, and hats off to you for your vigorous Taekwondo training. I'm a martial artist too, Okinawan Goju. If they aren't already, your doctors should be looking at this book: http://books.google.com/books?id=f_WE-DjDzJIC I wish you the best of luck.
    aquila 1263 Replies
    • October 24, 2008
    • 08:14 PM
    • 0
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  • Did they just call it a hemorrhage, or did they call it something else? Do you run fevers? Do you take any medications? Do you get dizzy, or just fatigued? Are you out of breath when this is happening, or does it occur even with light exercise? Are your joints more flexible than most people's, your skin more stretchy than other peoples, or anything else about you that is different from most people? Do any illnesses run in your family?
    qwertyuiop123 453 Replies
    • October 24, 2008
    • 10:23 PM
    • 0
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  • Did they just call it a hemorrhage, or did they call it something else? Do you run fevers? Do you take any medications? Do you get dizzy, or just fatigued? Are you out of breath when this is happening, or does it occur even with light exercise? Are your joints more flexible than most people's, your skin more stretchy than other peoples, or anything else about you that is different from most people? Do any illnesses run in your family? Yes, they did call it a hemorrhage, but I'm not sure what kind they said it was, just that all of them were behind the retina. Fevers - No, I generally don't get feverish. Medications - No, I have an inhaler, but I've never used it, and I take vitamins, but nothing other than that. Dizzy- The other night I did get dizzy and unbalanced, but it's not a usual symptom. Actually, the other night I had a whole bunch of atypical symptoms. I got really weak and shaky (more than usual for an episode) and my pupils were dilated (the nurse I know made me lie down with my feet up, and my pupils went back to normal. She mentioned that she had been afraid I would pass out, but I didn't get any spots or greyness around my vision at all). Breathing - I'm not really out of breath when it happens, any more than heavy exercise would account for, anyway. I did develop asthma recently (within the last year), but the asthma doesn't seem to correlate with the episodes often. Joints, etc. - No, nothing out of the ordinary. Family - Nothing like this, that I know of. Just diabetes (already been tested for that), skin cancer, and my grandmother had a problem with her heart where a valve was bent (my heart did not have any obvious abnormalities when I had the ultrasound done). I went to my cardiologist earlier today to get a 30 day monitor, so we'll possibly be able to rule out the heart as a cause for the exercise symptoms. I'm crossing my fingers, anyway.Thank you =)
    aljanny 4 Replies
    • October 25, 2008
    • 02:56 AM
    • 0
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  • hi would insist on having a ct or mri of the brain and even a brain wave test to rule out epilepsy.the brain can effect eye sight. good luckOkay, 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. Female18 years old5'3"105 pounds (high metabolism/daily exercise accounts for slimness) First: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.Specialists/Tests: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).Second: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.
    Anonymous 42789 Replies
    • October 25, 2008
    • 03:04 AM
    • 0
    Flag this Response
  • I don't have any answers for you, but your grasp of medicine is admirable, and hats off to you for your vigorous Taekwondo training. I'm a martial artist too, Okinawan Goju. If they aren't already, your doctors should be looking at this book: http://books.google.com/books?id=f_WE-DjDzJIC I wish you the best of luck. Thank you, anyway =) I'm tempted to see if I can borrow that book from the library (I wonder if my library would have something like that...maybe through my college library?) and look through it, since it definitely looks like it would have some leads. Ah, cool! I always enjoy meeting other martial artists. How long have you been training in Okinawan?
    aljanny 4 Replies
    • October 25, 2008
    • 03:22 AM
    • 0
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  • Any protein shakes? I think it's still diabetes, check it when you feel the symptoms coming on. Do you fly a lot? It's just an idea but people that fly and travel a lot get blood clots and they can move. Some blood clots can cause hemorrage. Not much but hope it leads to something.
    Anonymous 42789 Replies Flag this Response
  • Any protein shakes? I think it's still diabetes, check it when you feel the symptoms coming on. Do you fly a lot? It's just an idea but people that fly and travel a lot get blood clots and they can move. Some blood clots can cause hemorrage. Not much but hope it leads to something. Thank you! =) Actually, my mother was just diagnosed with Type 2 diabetes two weeks ago, so it's definitely something to recheck into. I'll talk to my doctor about it. And, as for the blood clots - I actually don't fly very often, so the blood clots do not sound like a likely cause, unless they were caused under other circumstances. - I suppose I should update the info I have posted on here, as well: I went through several ANA tests, and two came out borderline-positive, but the third was negative. I have heard that these tests can give false positives quite often, so I am not too worried about that, though apparently Lupus could have feasibly explained most of my symptoms...? All of the tests that were run at the cardiologist came back negative, so my heart has been ruled out as a concern. Anyway, my family recently switched to another primary doctor's office, as the one we were at was completely clueless as to what tests were being run for me, and why. When I described some of the symptoms to the nurse at the new office, she seemed to think that I should see a rheumatologist, so I guess that that is where I am headed next.Actually, she mentioned rheumatoid arthritis as a possibility. I can't say that I really know anything about rheumatoid arthritis, though... So I'm not sure if I just didn't explain the symptoms as well as I usually do (it's kind of gotten to the point where I can't remember all my own symptoms when it comes time to repeat them all... you'd think I'd have it all memorized by now, but the list seems to be growing and some symptoms are more at the forefront at different times...?) I think that's all the tests that have been done since I posted this...? I shall update it if I recall more.
    aljanny 4 Replies Flag this Response
  • ANA is Antinuclear antibodies...so it must be an autoimmune disease. you might have antibodies attacking your retinal cells or your nerves resulting your vision and difficulty of raising your arms above your head.check for some characteristic rash(PROBABLY SLE if rash on the face: "butterflly rash") or joint pains (artheritis). also, this could affect the heart. and the eyes as well.im just giving my idea...God bless you!
    Winston Fernandez 1 Replies
    • September 30, 2009
    • 01:45 PM
    • 0
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