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Old 07-09-2009, 01:22 PM #11
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Originally Posted by jprinz99 View Post
Sending hugs of symapthy your way. Fuzzy visin, double vision, etc all all for the birds. The nausea - we won't even mention how much fun that is!

Hope this all clears up and FAST

(my hubby says I look sexy-scary in my eye patched days. Yeah, like I felt I was sexy - not...)
I noticed this morning, that if all the lights are out, I dont have that much of a problem. Even with the tv on. Makes it kind of hard to read or crochet or knit tho. (well, I can probably crochet or knit with my eyes closed)

Maybe if I learn to read Braille, then I could get a bunch of library books to read?
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Old 07-09-2009, 01:30 PM #12
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Maybe if I learn to read Braille, then I could get a bunch of library books to read?

They do make books on tape, Erin, for those of us who have a hard time reading. They're actually quite relaxing.
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Old 07-09-2009, 01:49 PM #13
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They do make books on tape, Erin, for those of us who have a hard time reading. They're actually quite relaxing.
I've got the entire Harry Potter series on dvd, and I've been buying Stargate audio plays on cd (cant exactly call them books...they're more like episodes...run about an hour long mostly) I got a new one of those on monday that I havent listened to yet, and another one should be here any day for me to listen to. (with two of my favorite actors from Stargate in it. I'm so excited about that one!)

I have a computer program that I bought in late 2006 that I use to read fan fiction that I find on the internet. I use that at night sometimes when I go to bed. I usually fall asleep about 10 minutes into listening to the computer reading to me. The voices that program use are better than Microsoft Sam (the voice that does the narration on Windows computers)

I also have my iMac computer that uses the voice Alex (an Apple voice) that sounds pretty good.

I wish I had a Kindle2 (I have the Kindle1) The K2 has a text-to-speech function on it. I dont know if my Stargate novels would have the TTS enabled on them tho. So I'm not sure I'd be able to have those books read to me thru a Kindle or not. Some publishers had a hissy fit about the TTS and made Amazon disable it for some things. Jerks!

My dad has a K2, so I could borrow his to listen to some Tarzan novels, and John Carter of Mars (both my dad and I are Edgar Rice Burroughs fans)

I just cant wait for this stupid double vision to go away. I hate it. I think I hate it more than I did the giant blind spot that I had when I had optic neuritis 3yrs ago. I'd rather be in pain than have double vision.

What irritates me is that I just bought a membership to the exercise place down the street, and now my eye is all fubar and I just dont want to go exercise with a patch over my eye. It never fails, everytime I want to do something to improve myself, the MS Trolls get jealous and decide they want some attention and make life miserable for me for awhile.
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Old 07-10-2009, 05:47 AM #14
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Default back when i was diagnosed...they made plastic prisms for my glasses

sorry to hear about your experience...double vision/vertigo is what led me to be diagnosed (optho said was either brain tumor or ms). my double vision lasted from late jan 08 until june-ish 08. it truly sucked.

but my optho did make some prisms (plastic) to put on my lenses...they fell off a lot so i made him give me a couple of pairs...despite his terrible bed-side manner...he was wise in telling me to wait for the expensive option of having a prism lens...also as the double vision changed over the months getting gradually better...steroids were not given as an option even though i asked...

now, when i get tired, stressed or super hot...the doubles return! usually have to rest it out but it truly sucks....

hopefully, things will get better for you..do ask about the plastic "stick-on" prisms...i can ask my provider about the name if you need help...take care, m
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1st symptoms--01-27-08 (blurred vision)
dx 02-12-08
confirmed with neurologist 02-15-08 spinal tap 03.03.08
started avonex 03-14-08
july 2011-ish....lesions on the spine (at least two!)
.

started rebif 12-01-11

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do. Eleanor Roosevelt
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Old 07-10-2009, 11:34 AM #15
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sorry to hear about your experience...double vision/vertigo is what led me to be diagnosed (optho said was either brain tumor or ms). my double vision lasted from late jan 08 until june-ish 08. it truly sucked.

but my optho did make some prisms (plastic) to put on my lenses...they fell off a lot so i made him give me a couple of pairs...despite his terrible bed-side manner...he was wise in telling me to wait for the expensive option of having a prism lens...also as the double vision changed over the months getting gradually better...steroids were not given as an option even though i asked...

now, when i get tired, stressed or super hot...the doubles return! usually have to rest it out but it truly sucks....

hopefully, things will get better for you..do ask about the plastic "stick-on" prisms...i can ask my provider about the name if you need help...take care, m
FIVE MONTHS??? It lasted five months for you???

I called my neuro a few minutes ago to ask about steroids. This is driving me bananas. It's not so much the doubles, but the spinnies that the doubles are giving me. I'm tired of feeling sick.

Hopefully steroids wouldnt make me feel sicker.

I just spent money getting a gym membership that I cant use now, and I wanted to go back to school in a couple of months. I cant do any of that if I'm seeing twins of everything and cant walk straight.

stupid $%^&ing MS!! It $%^&ing sucks!
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Old 07-10-2009, 01:40 PM #16
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Default I'm getting steroids! ummm...yay?

my neuro finally called me back. I asked about the steroids...he was going to give me oral steroids (eww! and, arent you supposed to NOT take oral steroids for vision problems??)

So, after talking to him for a bit, and him realizing that I've read the ONTT (Optic Neuritis Treatment Trial) and that I'm not comfortable taking the oral for a vision problem....he's trying to get a steroid infusion set up for me.

He actually called my regular doctor to see if they can do it in their offices...(very close to my house) I'm betting they wont do it in their office, but will probably find me a nice close infusion center to have them done at.

I'll have to remember to show my regular doctor my membership to the exercise place, so that he'll see that I tried to start doing the exercises he wanted me to do the last time I saw him a few weeks ago. Maybe he'll still give me the LDN? (knock on wood...or particle board...there's wood in particle board isnt there? can it still be lucky if you're knocking on particle board?)

I'm wondering if they'll be able to do it tomorrow? Or if I have to wait over the weekend before they'll hook me up to a bag of steroids?

I am not looking forward to the side effects. Last time I had steroids (of the oral kind) I ended up with a rather icky infection of the female kind AND a staph (MRSA) infection in my nose. I hope that I dont get anything nasty like those.

I've never had IV steroids...can anyone tell me what it's like...is it as bad as the doctors make it out to be??
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Old 07-10-2009, 02:42 PM #17
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Originally Posted by volada View Post
sorry to hear about your experience...double vision/vertigo is what led me to be diagnosed (optho said was either brain tumor or ms). my double vision lasted from late jan 08 until june-ish 08. it truly sucked.

Our stories are very much the same (unfortunatley ). My double vision is what led to my dx, too, and mine lasted from October to April. It came on slowly and reversed itself just as slowly. My Neuro never mentioned a brain tumor but all my research on the Internet had me believing that's what I had.
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Old 07-10-2009, 02:56 PM #18
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My regular doctor just called back, he said he needs to ask my neuro a question or two and then he's going to call me back about where and when I'll be getting the steroids.

If they dont do it in their offices (I just dont think my regular doctor would tie up an exam room for several hours just for a person to get an infusion) I hope they get me into the place I read about that's open on the weekends.

I'm just hoping that the IV steroids dont make me all wacky and make me pee every 2 1/2 minutes like the oral steroids I had a couple of years ago did. That got old really quick. I can also do without the funky infections that I got from being on the oral steroids last time.

edited to add:

Got a call back from my regular doctor. Neuro is making me wait till MONDAY to get my steroids. (grrrr!) He told my regular doctor that he wanted me to wait till monday. Not sure why that is... The order for the steroids is for me to have them monday, tuesday, and wednesday. Not sure if I get the taper after that. Probably do.

They picked a different infusion center. One that's further west of my house, but I think I can probably drive that by myself without a ton of problems. (I'll take a cab if I think I'll have a problem) It's at the hospital that I drove myself to 3yrs ago when I had my very first episode of optic neuritis. I drove there half blind once, I think I can do it again. (I'll be patching my eye first tho) If it's morning, I wont have to drive facing the sun.

I'm just waiting for the infusion center people to call me to tell me what time and where in the building that I go to get my steroids.
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Last edited by Erin524; 07-10-2009 at 04:18 PM. Reason: added info
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Old 07-11-2009, 08:21 AM #19
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Default was yours optic n?

Quote:
Originally Posted by Kitty View Post
Our stories are very much the same (unfortunatley ). My double vision is what led to my dx, too, and mine lasted from October to April. It came on slowly and reversed itself just as slowly. My Neuro never mentioned a brain tumor but all my research on the Internet had me believing that's what I had.
mine was 6th cranial nerve palsy or something like that so steroids were not an option...i still get the dbl vision occasionally when tired/overheated/stressed! i'm on avonex...ms sucks but i'm glad it wasn't a brain tumor!
__________________
1st symptoms--01-27-08 (blurred vision)
dx 02-12-08
confirmed with neurologist 02-15-08 spinal tap 03.03.08
started avonex 03-14-08
july 2011-ish....lesions on the spine (at least two!)
.

started rebif 12-01-11

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do. Eleanor Roosevelt
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Old 07-11-2009, 08:27 AM #20
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mine was 6th cranial nerve palsy or something like that so steroids were not an option...i still get the dbl vision occasionally when tired/overheated/stressed! i'm on avonex...ms sucks but i'm glad it wasn't a brain tumor!

I know! I was happy to get the dx of MS when I thought it was a brain tumor! Just goes to show....there's always something worse.

I took two rounds of oral steroids but they didn't really help the double vision. Just made me hyper and hungry! I did have a case of bells palsy immediately following the double vision. It affected my face and to this day I can still see the weakness in one side of my face. Others say they don't notice it but I do.
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