Got Bad News Yesterday

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Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 1/30/2009 11:29 AM (GMT -7)   
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
-Tertle(Andy)


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/30/2009 12:44 PM (GMT -7)   
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.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Meche
Regular Member


Date Joined Nov 2008
Total Posts : 41
   Posted 1/30/2009 5:15 PM (GMT -7)   
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
Meche xx


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 1/30/2009 7:19 PM (GMT -7)   

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.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 1/30/2009 7:46 PM (GMT -7)   
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
-Tertle(Andy)


brownie197013
New Member


Date Joined Jan 2009
Total Posts : 12
   Posted 1/30/2009 9:50 PM (GMT -7)   
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!
Brownie197013


healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 1/31/2009 6:53 AM (GMT -7)   

Hi Andy,

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

Cindy


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 1/31/2009 11:49 AM (GMT -7)   
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

Steph57
Regular Member


Date Joined May 2008
Total Posts : 58
   Posted 1/31/2009 3:20 PM (GMT -7)   

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


 


Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 1/31/2009 9:03 PM (GMT -7)   
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.
-Tertle(Andy)


ms.daughter
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 2/2/2009 1:57 PM (GMT -7)   
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:)

Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 2/4/2009 6:17 PM (GMT -7)   
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
-Tertle(Andy)


theshultzgang
Regular Member


Date Joined Jan 2009
Total Posts : 38
   Posted 2/4/2009 8:51 PM (GMT -7)   
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 :)
Stay at home Mom
wheat / dairy free & organic since 2007 -- amazing difference!
Diagnosed with RR MS 11/2001
Copaxone and starting LDN
Healing more and more every day
Andrea :)


Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 2/5/2009 5:06 PM (GMT -7)   
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
-Tertle(Andy)


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 2/5/2009 5:44 PM (GMT -7)   
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. 

Barb/mystery reader
Diagnosed April 2007
Started betaseron --  May 2007 -- experienced allergic reactions after 2 weeks
Started copaxone -- June 2007 -- stopped after 4 1/2 months;experienced  severe 5 IPIR's
Started tysabri -- December 2007
Stopped tysabri -- April 2008 (developed antibodies/severe reactions)


Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 2/18/2009 9:18 AM (GMT -7)   
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
-Tertle(Andy)


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 2/18/2009 11:28 AM (GMT -7)   
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!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 2/18/2009 5:59 PM (GMT -7)   

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!!!


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 2/18/2009 7:23 PM (GMT -7)   
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  


Dx MS December, 2006
Started Tysabri March, 2008
Zanaflex as needed
Cymbalta

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