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I have a condition that has mystified at least 10 doctors, including [...]

Posted by krighter @krighter, Oct 22, 2013

I have a condition that has mystified at least 10 doctors, including opthamologists, occuloplastics, and neurologists; if light gets into my left eye, my blink response becomes very hyperactive. It was misdiagnosed as blepharospasm until I met with an occuloplastic who said that he's never seen my symptoms before. If I wear an eye patch over my left eye, the blinking returns to normal, otherwise, both eyes blink in tandem, to the point that I can't function. I tried botox injections but it didn't help at all. Any ideas?

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michelle disalvatore | @cantfindanswers | Oct 27, 2013

I have had a condition that also has stumped many doctor's,For 23 years and 10 surgeries later on my eye's and head and still no answers to what has caused this problem,I have one eye that is closed and one eye that is stuck open with nerve damage to my temporal area,i have had test for mg,all thyroid test,i do have hashimoto's disorder, but all doctor's tell me that that would have nothing to do with the eye,thought it was graves for a long time because of the ptosis but blood test show no.I feel a little better knowing that i'm not the only one that can not get a proper diagnoses,but at the same time alittle upset that we have to go through this.

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krighter | @krighter | Oct 27, 2013
In reply to @cantfindanswers "I have had a condition that also has stumped many doctor's,For 23 years and 10 surgeries..." + (show)
@cantfindanswers

I have had a condition that also has stumped many doctor's,For 23 years and 10 surgeries later on my eye's and head and still no answers to what has caused this problem,I have one eye that is closed and one eye that is stuck open with nerve damage to my temporal area,i have had test for mg,all thyroid test,i do have hashimoto's disorder, but all doctor's tell me that that would have nothing to do with the eye,thought it was graves for a long time because of the ptosis but blood test show no.I feel a little better knowing that i'm not the only one that can not get a proper diagnoses,but at the same time alittle upset that we have to go through this.

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I think a lot of this sort of thing goes on in a lot of medical areas. I
once had a stomach ache that lasted for a year and a half, and got scoped
both ways, had all kinds of tests run, and nobody could tell me anything.
Then suddenly it went away for no reason. I'm starting to think I'm the
Mystery Patient of All Time. 😉

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Lee Aase | @LeeAase | Oct 29, 2013

Your questions sound interesting, and seem to fit with what Mayo Clinic does really well. Having a team of specialists working together lets them get to the source of the problem more readily. Sometimes the symptom may show up in one place but the cause is in another organ, so that's where having the different specialists reviewing your case can make a difference. You might want to click the appointment request link if you'd like to be examined.

@krighter
@cantfindanswers

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