Searching the internet sometimes does
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| Sun, 01-20-2008 - 11:03pm |
More harm than good.
With Cait's double vision episodes and other symptoms I have begun a search to try and figure out what is going on. Sound familiar Paula? We have been blaming her seizure disorder on all this but really it just doesn't sound like seizures I have heard of.
At anyrate, wouldn't you know it. Cait's symptoms and her lesion on the last MRI are mentioned in everything I read about MS.
BUT MS only is diagnosed in adults, right? WRONG! 5% of newly diagnosed patients with MS are kids, usually teens and usually girls.
-fatigue
-double vision and vision disturbances
-numbness in face and/or limbs
-attacks and then remissions (she went through 2 months of symtpoms then nothing for a month)
-loss of coordination (karate instructor threatened to fail her because she was doing worse so must not be practicing until I explained the seizures and there affect)
-lesions in the white matter
There are more too and Cait doesn't show all the signs but that is common. She just has too many to ignore. UGH! At least we are seeing the neuro on Wednesday.
On a good note, everything else I read that can be a cause of double vision is HORRIFICALLY scary. since there is so much research on MS and new treatments and it isn't fatal, I am almost hoping that is it so we will have an answer and know what to do about it.
Just wanted to vent all that out there.
Renee




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OMG!
well, actually, compared to some of the other causes of double vision that I saw, MS is pretty treatable.
Cait would have what is considered the binocular version because when she covers 1 eye she sees clearly. http://www.intelihealth.com/IH/ihtIH/24479/9339/9843.html
She doesn't have strabismus and never did, she hasn't had a head trauma, and she shows no other signs of diabetes. That leaves us with MS, stroke, tumor, graves disease and a few really nasty neuromuscular degenerative diseases. I also found on another site the possibility of mitochondrial disorders. Those are very nasty.
I don't want her to have that one but in the grand scheme it seems the lesser of evils with all the press and research that is going on with that at this time. There likely will be a cure in her life time and there are many treatments. I just want to start treatments soon because it is getting frustrating to keep seeing these symptoms happen and not know why or how to stop it.
Just wanna throw you a hug girl {{{Renee}}} I wish I could do more.
Lainie
oh crap Renee,
I do know well that place of which you speak. I could write a thesis on Internet medical research.
I keep hoping that all this will come down to the meds, she will change to a different one, and all will be well with the world.
my fingers and toes are all crossed for Wednesday
-Paula
www.onesickmother.com
visit my blog at www.onesickmother.com
Oh I am sorry that you got all scared from the internet reading...I do the same thing sometimes, but feel that its necessary to read because its good to be proactive. I just have learned to use the info in a positive way, not to freak myself out.
Hi Renee,
I'm sorry you're going through such a tough time.
Renee, I'm so sorry that your researching is leading to such scary things.
Renee,
You mentioned stroke in your post which got my attention because of Ella. Have you ever been told that Cait had a visual field cut? I know when I first took Ella to the neuro she felt Ella had a stroke because of her visual spatial issues and also her lack of awareness of objects that were above her and to the side of her. I remember the neuro saying that in older kids with visual field cuts double vision was a symptom. She had a MRI that was clean for lesions but the neuro said that can happen because it can repair itself especially if it happens at birth. The only thing that showed up on her MRI that was different was she had an immature tegmental tract(controls sensory processing).Ella had other symptoms of stroke like weakness all down her left side, facial asymetery and she drags her left foot a little when she walks. Her balance is horrible and she is always falling.Her
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Edited 2/19/2008 1:06 pm ET by littleroses
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