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Forums / 4/3/06.... What a tiring day...

vip
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So, Monday was a rather long day... I've scheduled it with work that I have Mondays off to make it easier to get Terasa to physical therapy and doctor's appointments (when they need to be scheduled, at least there's a SET DAY that is available to do so, instead of trying to work around a work schedule)...

Starting in the early morning (8am), Terasa had an appointment to have her new ankle brace reviewed (to make sure everything was the way it should be working)...

We then went (litterally) across the street to her (relatively new, as she's changed insurance companies) clinic, where she had a couple vials of blood taken for tests for her Rheumetologist (she has Sjogren's Syndrome, the tests are to make sure her liver functions (and whatnot) are within 'normal' parameters)

After THAT we went to her Physical Therapy appointment at the Regions Hospital pool, one of her last therapy appointments (we think)...

Followed that up by a visit to a Retinal Specialist at the Regions Specialty Center. This appointment was at 2pm... This was at the insistance of a regular Optomitrist (eye doctor), when he noticed something 'odd' with the back of her retina at her last appointment. They ran many tests, and finally determined the problem with Terasa's vision (something you wouldn't think would be a 'big' problem...), she had found herself squinting at the TV from time-to-time trying to focus on it... There was no change in her eyeglass prescriptions, but there was nothing that seemed to help. It was/is a 'from time to time' kind of thing, but was a big flag in the Specialist's eyes...

Many a test later (about 3 hours later), and the 'specialist' confering with a higher up 'specialist', they have concluded that Terasa has either Cone Dystrophy; or more likely, Stargardt's Disease...

Stargardt's Disease is
Clinical Description

Stargardt's disease, also known as fundus flavimaculatus, is usually diagnosed in individuals under the age of 20 when decreased central vision is first noticed. On examination, the retina of an affected individual shows a macular lesion surrounded by yellow-white flecks, or spots, with irregular shapes. The retina consists of layers of light-sensing cells that line the inner back wall of the eye and are important in normal vision. The macula is found in the center of the retina and is responsible for the fine, detailed central vision used in reading and color vision.

The progression of visual loss is variable. One study of 95 individuals with Stargardt's disease showed that once a visual acuity of 20/40 was reached, there was often rapid progression of additional visual loss until acuity was reduced to 20/200 (legal blindness). By age 50, approximately 50 percent of all those studied had visual acuities of 20/200 or worse. Eventually, almost all individuals with Stargardt's disease are expected to have visual acuities in the range of 20/200 to 20/400. The reduced visual acuity due to Stargardt's disease cannot be corrected with prescription eyeglasses or contact lenses. In late stages of the disease, there may also be noticeable impairment of color vision.

The distrubance to her vision is (as of yet) minimal, but the doctors (repeatedly) said that, in time; it might get to the point where she'd be able to see the outline of a clock, but be unable to tell the time... her periphreal vision will be unaffected, but it's the central 'cone' that you use to focus on something that will be affected by the disease...

Now, the good news to this... assuming you could call it that... is that she will NOT GO BLIND, but I dunno.... might as well be (since at 20/200 you legally ARE)...

I dunno... Lots of reading this evening has me confused, and since it's 3am as I type I'm probably not to my fully-cognative self... What we DO know is that we have an appointment with THE specialist of Genetic Retinal Diseases at the University of Minnesota, and after another bout of tests, they should be able to pound out a DEFINATIVE diagnosis, along with all the recommendations to slow down the progression of the disease, what kind of treatments are available (although there are no KNOWN cures, there are some treatments out there that seem to have a positive reaction to the conditions), and all that wonderful stuff...

Needless to say, after April 20th we'll have more information on Terasa's condition, what the future may hold for her, what to expect, etcetera, etcetera....

Keep her in your prayers (those of you who do that sort of thing), and wish us the best!
vip
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Will do! Best of luck to her.

You know, the one good thing about that is that you will be able to look as ugly as you want, in some time ;)
vip
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:P hehe...
vip
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I will be thinking of her, I hope for the best. at least you know what it is, and they know she won't go blind, the best you can do is what you are doing, lots of reading, know everything you can know. much hugs for the both of you.
staff
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Damn, I hope it all goes well. I suppose you just have to use the time you've got now. As said above, at least you know what it is and you can deal with it now rather than later.
staff
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This is standing by one's woman. All the best.
vip
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Thanks to all of your support, I'm just unsure as of what to say about what all's going on now... There is nothing 'new' going on after Monday, as it's not like Terasa's suddenly taken a turn for the worse, or that she WILL suddenly just 'get' worse.

Only thing is, the doctors aren't sure what it is that she has, they're pretty sure that she's got Stargardt's Disease or Cone Distrophy... We've got an appointment at the University of Minnesota with the specialist of genetic eye disorders on Thursday, April 20th, so hopefully we'll learn everything we need to know then...
staff
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It's pretty crap when you get shipped from doctor to doctor. Hopefully you can find out soon exactly what she has so you don't have to worry so much. At least she has your support, it would help a lot.
vip
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I'd forgotten to post what we found out at the University of Minnesota a week ago...

It was determined that Terasa has neither Stargardt's Disease OR Cone Distrophy...

They don't know WHAT she has.... in ANOTHER month they'll be able to get her back in to re-run some tests from last time, in addition to even MORE tests... all to (hopefully) figure out what it is that she DOES have...

You know, it's bad enough when you have an IDEA as to what's wrong, but it's NOT KNOWING that's really troubling me (and her, but she's still not really showing it)....

Otherwise, life goes on at it's normal pace around here...
vip
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Maybe she just ate a bad orange
vip
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well I suppose it could be looked at as good news because she doesn't have this thing that will make her go blind! but I can imagine how frustrated the two of you are. does she believe in/want to try alternative medicine? I always told myself if I get cancer/something bad you know I would do acupuncture or something of the sort as well as western medicine, explore all areas you know? acupuncture has helped me before but for something much much smaller than what she is going through. it's worth a try I know a lot of them will take insurance.
vip
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Yeah, we'll see... First off, of course, it to get the issue diagnosed... After that, then we'll get everything moving in the right direction!!!!!
vip
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Since I gt eye issues like a madman, I can recommend that she starts taking some Vitamin A, thats good for the eyes and who knows! It might help
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wouldnt it be great if the cure for Cone Dystrophy and Stargardt's Disease actually turned out to be "take more vitamin a".
vip
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*healing mantra, reiki-style*
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