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Anyone here have Fuch's Dystrophy?

Eye Conditions | Last Active: Oct 23 12:11pm | Replies (84)
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@colleenyoung

@irinig, I'm tagging fellow Fuch's dystrophy members like @jrl2023 @sharonfranks1119 @raye @ccagack23 @grmnancy @marymaurer @jules359 @odreid to see if they having any experience or tips for you.

While your doctor recommended stopping the eye drops to slow the ENT symptoms like frequent expectoration, nose pain and throat issues, did they suggest what you can do to relieve the eye pain without the drops?

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Replies to "@irinig, I'm tagging fellow Fuch's dystrophy members like @jrl2023 @sharonfranks1119 @raye @ccagack23 @grmnancy @marymaurer @jules359 @odreid..."
irinig | @irinig | Mar 17, 2023

Hello Colleen. I am an ex-chemist & know that foreign objects in the body (brain, blood-brain barrier/ENT etc) affect all areas not just the immediate vicinity…Not surprised or shocked by my doctor’s response.

In my case I cut down the Muro 125 to 3x/day in both eyes (previously 4x in the bad eye) & sleep with Muro 125 cream in both eyes. It is uncomfortable & a pain though trial & error for sure, as I await for symptoms to ameliorate. I don’t like spitting like a truck driver & hate how my eyes sting, but I do it. My left ear rings a lot, my throat feels weird often…I have heard of worse symptoms. As yet, I am 64 & do not Medicare qualify until Sept. So until then…I will do the best I can & not let this illness get the better of me. Oddly it got way worse during the Covid. times…Any connection?

Thank you Colleen for your message to us FDs‼️

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