First Diagnosis: Usher's Syndrome

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Re: First Diagnosis: Usher's Syndrome

Postby Colliemom » Sat Sep 21, 2013 7:04 am

Thank you so much for all your prayers and concerns everyone. I means a lot to know there are caring and supportive people out there :D But then this forum is known for that.

Yep, the more I think about it and try to remember what went on in my childhood, the less I am willing to go along with that diagnosis too. I mean, why after all these years, having cateract surgery on both eyes and being told all was looking good until just now, makes me wonder where the docs are coming from. Seems like somebody would have mentioned this before then. Crazy. And yes, the more you read up on it, the more the brain gets confused. It's not a simple thing to explain.

But, you can be sure, that when we see the next doc, my cuz and I will be armed with a mess of questions and if I am not satisified with what he says, will ask for a referrel to a better place, like maybe Kellogg Eye Center that Judy suggested. Even my close friend Brenda, who has a hearing loss like I do and glaucoma to boot, says something doesn't add up here.

So, I will wait and go from there. In the meantime, I am hauling myself and Sassy up to the U.P. for about 9 days and have some fun enjoying the fall color and exploring around, or just kicking back and enjoying the lake etc. Will definitely keep you posted.
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Re: First Diagnosis: Usher's Syndrome

Postby Liz » Sat Sep 21, 2013 7:31 am

Sorry for the scary diagnosis, Sue. And sorry you have to wait to find out more. But I am glad you are seeing a specialist and have someone to go with you. Praying that is it not what the dr. thinks, and your fears will be relieved with a second opinion.
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Re: First Diagnosis: Usher's Syndrome

Postby avalen » Sat Sep 21, 2013 8:00 am

always good to have another opinion, glad you are seeking that out. Big hug for you as you go through this waiting game.
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Re: First Diagnosis: Usher's Syndrome

Postby mitch5252 » Sat Sep 21, 2013 8:47 am

BirdbyBird wrote:...After reading the article it does make you wonder because they all talk about the symptoms generally showing up in childhood or teenagers. Hopefully the second opinion with clear up that and head you off in a brighter direction with the potential of much better outcomes. Keep us posted.


..

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Re: First Diagnosis: Usher's Syndrome

Postby Nasoosie » Sat Sep 21, 2013 1:41 pm

Interesting info I read. It would definitely behoove you to get another diagnosis, or two, and then come up with a plan of action for maintaining your sight and hearing. You deserve a break and a vacation with Sassy in the upper peninsula for sure. Maybe you will have internet connections this time? If not, we will miss you while you're gone. Maybe I'll catch you in a chat room before you leave.
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Re: First Diagnosis: Usher's Syndrome

Postby grammynmaggie » Sat Sep 21, 2013 4:55 pm

More opinions the better..prayers for you Sue....
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Re: First Diagnosis: Usher's Syndrome

Postby JoanE » Sun Sep 22, 2013 9:20 am

Sue, wishing for a better outcome on your diagnosis. You are doing the right thing in seeking another opinion.
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Re: First Diagnosis: Usher's Syndrome

Postby bluepinecones » Sun Sep 22, 2013 11:34 am

Sorry to read about this Sue. Prayers for a better 2nd opinion, so glad you are seeking another evaluation.
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Re: First Diagnosis: Usher's Syndrome

Postby Colliemom » Sun Sep 22, 2013 6:05 pm

Actually I'm not "seeking" a second opinion. This doctor is referring me over to another doctor in the same office who specializes in this type of thing. So maybe I can find out a bit more info and he will do his own assessment. In the meantime I am leaving for the U.P.on Saturday and to heck with it all.
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Re: First Diagnosis: Usher's Syndrome

Postby Nasoosie » Mon Sep 23, 2013 8:55 am

Colliemom wrote:Actually I'm not "seeking" a second opinion. This doctor is referring me over to another doctor in the same office who specializes in this type of thing. So maybe I can find out a bit more info and he will do his own assessment. In the meantime I am leaving for the U.P.on Saturday and to heck with it all.

Sounds like a wonderful idea!
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