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Posted 1/30/2009 6:29 PM (GMT 0)
So for the past week I have been noticing that my left eye was acting funny, I was basically having tunnel vision and it really sucked because I have ON in my right eye already. I went to the eye doc yesterday to get it checked out and found out that I now have ON in my left eye. I feel like I'm walking on a tight rope, I can never keep my balance.
So I am starting the good old iv steroids today. Hopefully it will help right away. I'm really scared that I'm going to end up blind or something. I have already been worrying about ending up in a wheel chair because of my leg problems, and then now this........ I'm lost


Andy
Posted 1/30/2009 7:44 PM (GMT 0)
Hey Andy

I"m so sorry friend. I know this is scary and u'r very worried. Please hang on and know u are not alone and that this can get better. Try to take a deep breath and go one day at a time for now. There are a lot of factors to consider here and this doesn't have to mean the worst. We're here with u friend. Feel better.
Posted 1/31/2009 12:15 AM (GMT 0)
Hey andy,

Sorry to hear what your going through just now. I am with rhonda, take each day as it comes and were all here for you, all the way.

Take care
Posted 1/31/2009 2:19 AM (GMT 0)

Hey Andy,

Hang in there.  From what I have heard, Optic Neuritis responds very well to the IV steroids.  I know you are scared; I would be scared too.  The unpredictability of this is horrible.  Please rest and take good good care of yourself.  Do all you can to manage your stress.  Let us know how you are.

Posted 1/31/2009 2:46 AM (GMT 0)
Thanks everyone, I'm going to do my best at taking it one day at a time. But that is hard also, I have 2 wonderful children ages 4 and 2 and they always keep my running, And right now its hard because both eyes are blurry and I can barely walk straight. Either way this happened for a reason, and I just have to take it that way....

Alright gotta go, I've been having a real hard time with this and I have been very emotional....That's my weak point, have had a very hard past 2 years.

Thanks again
Posted 1/31/2009 4:50 AM (GMT 0)
Hi Andy, I'm so sorry for your latest complication to this dreadful disease! I know it can get overwhelming (trust me) to have symptom after symptom, day after day, month after month...but when you're really down you just think about those wonderful kids and their unconditional love! Take a moment by yourself to get emotional, I like to be strong and stoic even living by myself but when I need to release I decide to just let it overwhelm me by crying or yelling or whatever helps get it out and then you feel better and don't take things out on those around you. Look at all the great things in your life and know that this is just another battle but you're going to win it-get on those steroids and beat this thing! My thoughts are with you!
Posted 1/31/2009 1:53 PM (GMT 0)

Hi Andy,

Hang in there.  Those IV steroids work wonders.  You are in my prayers.

Cindy

Posted 1/31/2009 6:49 PM (GMT 0)
Hi Andy,

I’m so sorry you’re having such a rough time of it. I know you were really hoping this wasn’t ON, but I’m glad you finally got ahold of your doc and are now getting treatment. I hope those steroids start to work really quickly. I’m sending good thoughts your way….

Sunny
Posted 1/31/2009 10:20 PM (GMT 0)

Ditto to all that came before. Just remember, if the flames of your "inner chuckle" remain stoked, each day will bring with it a new and wondrous blessing. And, I would hope, the opportunity for a few chuckles!

Take care of yourself. Also, you'd be surprised at how resiliant kids can be. Those are wonderful ages, and I am looking forward to my first grandchild in late May! Please keep us posted.

Steph57 smilewinkgrin

Posted 2/1/2009 4:03 AM (GMT 0)
Thanks again everyone, your right when I think about my kids or look at them and get hugs and kisses from them, it all goes away temporarily.

I'm now on my 2nd night of these steroids, and I almost forgot how much I hate them. I got about 3-4 hours of sleep last night, so I'm just looking forward to tonight.

I really appreciate everyone's support and replies. That is why I've been here almost 2 years. Talk to you all soon.
Posted 2/2/2009 8:57 PM (GMT 0)
My mother says:
13 years ago I had ON in my right eye. I was totally blind in that eye for 1 month. The eyedoctors don't usually give you much hope becuase they just don't know. They gave me steroids by mouth and my vision did come back. Just a few weeks after that ....it came back in the same eye. I got steroids by mouth again. Today I have 20/20 vision! Remember this was 13 years ago. So... don't give up just yet, because there is hope once the inflamation is calmed down:)
Posted 2/5/2009 1:17 AM (GMT 0)
Thanks for the inspiration ms. daughter. I really need it about now. On Super Bowl Sunday, we had some friends over and their son was just getting over strep..... and guess who got it. Yea me, so I really feel like crap. Then I go to the doc today and find out I missed my appointment, it was Monday. Pretty frustrating. I can barely walk right now, I even used a wheel chair at the hospital. My wife is running around our house like Superwomen taking care of the kids and I, That just shows how strong and how much she loves us. I really appreciate everything she has been doing and putting up with. Anyway, sorry for being all over the place with this, but just wanted to get some stuff out. Bye
Posted 2/5/2009 3:51 AM (GMT 0)
Hi Andy (Tertle),

Hang in there! Don't give up hope and know that you've hit the bottom and can only go up. Kids are a blessing but can tire you out (we have a four year old too), so pace yourself. Stress and worry is the WORST thing for MS, so just give it to God and know that by this time next week, you'll feel better.

In my prayers! Andrea (Ande :)
Posted 2/6/2009 12:06 AM (GMT 0)
I went to see my neuro today, and he is thinking about changing my therapy. Maybe to Tysabri or one other one that just got released, I can't remember the name. But I'm not sure how I feel about it, kinda being pulled both ways. I want to be on a med that is going to really help me and get me over this, but on the flipside, I really don't want to go on an infusion type of med. But either way whatever has to be done must be done. He also put me on oral steroids for about 12 more days( not looking forward to this) I was just getting back to sleep.

Your right Andrea, stress is really bad, and I somehow can't find a way to avoid it. Obviously money is the number one stresser, can't really avoid that these days.

Well, gonna go now, kids are getting crazy! Bye and Thanks
Posted 2/6/2009 12:44 AM (GMT 0)
Andy,  I am sorry you are having such a rough time. I have not been on here for awhile so I did not know what was going on.  I understand your relunctance to go on tysabri, but it seems to helping lots of people.  And those once a month infusions were much better than daily injections.  I hope the steriods are helping. 

Posted 2/18/2009 4:18 PM (GMT 0)
Well, I wanted to update everyone on my ON issues. Its been a few weeks now that I'm off the Steroids and my left eye is alot better. Not 100% but it's pretty good. I still have blurriness and a little pain but nothing like the very first day. I guess I'm kinda happy about it, I still don't like the fact that I have ON in both eyes but at least I can see.
I have also chosen to not drive anymore. I have to much to risk (wife,kids,family) It would be stupid to get behind the wheel and risk all that..... Hope everyone is doing well, and OUR week is coming up pretty soon, March 2nd or 3rd I think. I might try to get into the MS walk around here.......maybe.

Bye
Posted 2/18/2009 6:28 PM (GMT 0)
Hey Andy!

WOW!!!! Good to hear!! I know u'r vision isn't like it was before, but hang tight. U'r new norm may not be u'r old norm, but it sounds like it's so much better than it's been! Take care and thanks for the update! Good call on the driving friend. No need to risk anything u don't have to...esp with the family and wife. Keep us posted and let us know if u get into that walk!
Posted 2/19/2009 12:59 AM (GMT 0)

Hey Andy,

That is great that you are feeling better.  I am so glad.  Yep, you are right......."our" week is March 2 - 8.  This is MS awareness week as per the MS society.  That is wonderful that you are thinking about walking for MS.  Good luck with that.  Keep posting!!!

Posted 2/19/2009 2:23 AM (GMT 0)
Hey Andy,

I am so glad your feeling better. I just wanted to offer support and to let you know that if you have any questions regarding Tysabri, let me know. I have been on it for almost a year now and am doing quite well. My MRI showed no progression at 6 months and i am due for another one at 1 year which will be next month. Please feel free to either post any questions you might have or you can email me if you wish.

Take care,

Lynn wink  

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