Sorry in advance if this post doesn't fit guidelines or whatever, this is the first time I've ever used this site.
For the last 7 weeks I've been constantly in and out of the neurologists, pediatricians, ER, and hospital. Blood tests, urine tests, 20+ different meds (not at once, but overall,) balance tests, hearing tests, MRIs, EKGs, soon a spinal tap, and others. I think it's been a total of 11 times- that's almost 2/week. I still don't have a diagnosis.
My symptoms include:
-constant vertigo, more severe at times but moderate constantly. I'm frequently dizzy too, even if I'm laying down or resting.
-very frequent headaches and migraines. Each headache seems to be in a different place and different kind of pain than the last.
-sensitivity to any light. Seeing any noticeable light at all causes that camera flash sensation.
-hot flashes and chills, not caused by fever.
-constant thirsty feeling but not because of dehydration.
-extremities feel really cold and numb often.
-when I'm stressed at all or tired, my muscles twitch (especially in my face and neck)
-vision is red tinted often.
-some form of agnosia, I don't remember which one, but parts of me feel really weird. It's not really a numb feeling cause usually when I'm numb I feel really cold, but this just feels like somethin isn't there or it's going to ooze away at any second- like it isn't connected.
-a swollen lymph node on my right collarbone
-difficulty breathing and chest pain.
-there's others but I'm tired so my memory isn't great.

I've listed a lot of tests up there but down here I'm going to say how the results are.
-Blood tests: I've had blood work done 4 times and they checked for spotted fever, thyroid, Lyme, etc. My electrolytes and other things are fine and healthy.
-MRI: had it about a month into this. It looks extraordinarily healthy according to many of my doctors- despite I've had many concussions that have caused me to be slow and bad long term memory.
-EKG: fine
-blood pressure: I've had it 25+ times in different parts of me, with me laying down and sitting and standing, and it's not high enough to cause any issues but it's a bit high.
-hearing tests: they did special ones to rule out labyrinthitis. My hearing has not changed from a year ago so it's fine.
-urine tests: had them often and fine.
-balance and walking test: I fall A LOT and can not walk in a straight line from vertigo. I also collapse from weakness, too.
-chest x rays: look fine
-various neurologist tests and exams: look fine.

I keep getting worse. Sometimes it gets really bad and I stop being able to breathe completely, nearly faint, can't even move- but I have a med that fixes that.

They still don't know what I have but I can't sit up for very long or walk at all. It's miserable. They say if it's the thing there's a long shot of it being, I'll have it for 2-4 more years, or unlikely but possibly 10+ years.

So if anyone has had a similar issue, or even just had something that couldn't be diagnosed no matter what tests were done, I understand completely.
polyglotparrot polyglotparrot
16-17, F
Aug 21, 2014