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Old 07-29-2014, 04:50 PM #1
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NurseNancy NurseNancy is offline
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hi and welcome to NT,

you've gotten some great advice.
write down your sx's (symptoms) for your next dr visit. try to keep things clear and concise. the dr may not listen if you throw too much at him.

however, write down your Q's as you think of them. try to bring a friend or family member with you to the appt as a 2nd set of ears.

it is a bit of a process to eliminate things that could mimic MS and to also make the dx (diagnosis). try to take 1 thing and test at a time. having all this info thrown at you can of course cause anxiety and/or depression. please share this with your pcp if you think it's lasting too long.

we're here for you. keep us posted.
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Old 07-29-2014, 06:41 PM #2
Starznight Starznight is offline
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I'm glad your doctor listened to the monocular diplopia, mine said that since it was in both eyes, no problem it was only an issue if I only had monocular diplopia in one eye. But if it was in the left and the right I was fine. It didn't sound right to me, but...
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Old 07-29-2014, 07:12 PM #3
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Quote:
Originally Posted by Starznight View Post
I'm glad your doctor listened to the monocular diplopia, mine said that since it was in both eyes, no problem it was only an issue if I only had monocular diplopia in one eye. But if it was in the left and the right I was fine. It didn't sound right to me, but...
It kept getting put in the system as binocular and not monocular. So when I saw the neuro he asked me if covering one eye helped I had to take a breath and make it clear I only see double when one eye is covered. Lol. He was like oh...
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Old 07-30-2014, 06:57 AM #4
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Default Hi Summer :)

I am also in limbo and also just joined here ... have had binocular double vision since April which earned me a trip to a neuro opthamologist.

But each eye individually is fine. I guess that is why I was referred quickly?

IN order to see, I have to cover one eye. I now have temporary prisms in two sets of glasses to help me see the computer, or to read.

Summer, I kept my notes in journal style, but my dx process has been going on forever. (Yes, I am exaggerating! -- just feels like forever) Eventually I summarized my history on a timeline, which I took to my last neurologist appointment. My neuro loved it and actually wrote all his notes on it.

Not everything was on it. My "everything" makes my neuro's eyes glaze over and reduces him to a catatonic state . It helped him see that although I have a lot going on, there are definite periods of relapse and remission for individual symptoms. They do sometimes overlap.

Just an idea as you keep your notes .

Have you had bloodwork done? I was low in vitamin D and magnesium -- since I started supplementing magnesium in particular I've had much less trouble with the cramping in my feet and toes, and hardly any cramping in my calves. These would be good tests to do.

I also have periods of time where it is difficult to speak; also word-finding, etc.

This process is long, and I'm happy you've found a place to go to for support. No one in real life gets it .
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Old 07-30-2014, 08:20 AM #5
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The time line is a good idea. Yeah I think my notes would make any dr.'s eyes glaze over. I started a simplified question sheet because I am sure the dr will answer those with out asking so I have a check list. I think binocular is worse. :/ But I am glad some of the prisming is helpful for you!
I keep lights turned off which helps with the head aches behind my eyes and forehead. Pain meds help but I don't want to get used to taking too much on a daily basis. It would be nice if this as some thing that could be diagnosed quickly :/ But I suppose I could learn some more patience.... haha
I am most afraid of being told I am not allowed to drive. I honestly just don't know how I would manage my daughter starting prek next week and not being able to take her. My mom would demand her school be changed if she had to drive her for me. :/ But no one has mentioned it so I am trying to be positive. I would not get behind the wheel if my eyes didn't seem to work better together. Reading signs seem to be my only issue.


Quote:
Originally Posted by cedarsleeping View Post
I am also in limbo and also just joined here ... have had binocular double vision since April which earned me a trip to a neuro opthamologist.

But each eye individually is fine. I guess that is why I was referred quickly?

IN order to see, I have to cover one eye. I now have temporary prisms in two sets of glasses to help me see the computer, or to read.

Summer, I kept my notes in journal style, but my dx process has been going on forever. (Yes, I am exaggerating! -- just feels like forever) Eventually I summarized my history on a timeline, which I took to my last neurologist appointment. My neuro loved it and actually wrote all his notes on it.

Not everything was on it. My "everything" makes my neuro's eyes glaze over and reduces him to a catatonic state . It helped him see that although I have a lot going on, there are definite periods of relapse and remission for individual symptoms. They do sometimes overlap.

Just an idea as you keep your notes .

Have you had bloodwork done? I was low in vitamin D and magnesium -- since I started supplementing magnesium in particular I've had much less trouble with the cramping in my feet and toes, and hardly any cramping in my calves. These would be good tests to do.

I also have periods of time where it is difficult to speak; also word-finding, etc.

This process is long, and I'm happy you've found a place to go to for support. No one in real life gets it .
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Old 07-30-2014, 08:20 PM #6
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Ditto on the driving. I am doing my best NOT to ... because I don't want to be in any situation where I shouldn't have and have my license suspended.

My distance vision is okay unless I'm really tired. Which happens frequently.

I've had a bunch of other things going on to in the now 18 months since this all started ... April 2014 was the first real vision issue though. The double vision makes me incredibly grumpy. Incredibly. My first mri in March 2013 was for trigeminal neuralgia.

I hope your dx process goes more quickly than mine has .
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