some HOPE for you "diplopiers" out there

[doublevision1]

Nine months after onset of my double vision, I'm so relieved to have learned that it continues to improve.  I just came back from a visit to my orthoptist and she was very impressed with how much better it is, since onset and even just in the past month alone.  I still have it on left lateral gaze, but my distance diplopia numbers are much lower than last month, and for the first time, I could make out all of the images in the depth perception tests.  Last month I could only identify half of them.  

Subjectively I have noticed I can eliminate the double vision with a slight head turn, whereas before I really had to stretch my neck to accomplish this.  I can get into just the right comfortable position to watch TV without a problem now.  I can tolerate longer periods staring at a computer screen before the eye strain sets in.  

To look at me, my eyes finally appear aligned again.  A few months ago I was practically cross-eyed and extremely self-conscious about this.

When this started, I was told my my ophthalmologist it should be back to 100% in 3 - 6 months.  He was very optimistic.  My neuro was more guarded, said maybe it would improve, maybe it never would.  Only time would tell and no way to treat it.  

I've had two rounds of IV steroids, in Oct 07 and Apr 08, to deal with symptoms from relapses, but the steroids seem to have had no effect on speeding up my vision recovery.  It has improved at the same slow, steady pace since last fall.  Thankfully my Apr 08 relapse did not seem to set me back vision-wise; it seems all of the new symptoms were spinal-related.

I have definitely noticed a negative effect on my vision from both fatigue and heat.  On Sunday night I got zero sleep, and on Monday morning my double vision was worse and I could just tell by looking at myself in the mirror.  After some sleep, it was better.  Same for exercise, I look in the mirror while I'm on the treadmill and the eyes look slightly crossed, then I cool down and it goes away.  Thank goodness these effects are only temporary and somewhat controllable.

I just wanted to report back on this, to let those folks out who are suffering with diplopia that there IS hope, and this problem can resolve over time.  Six months ago I was pretty depressed about this, thinking it would never improve and I would have to just get used to it.  It's been a huge test in patience for me.  In the back of my mind, I am of course concerned about how future relapses might cause further damage, but for now I'm just grateful to have come as far as I have, and will enjoy it while it lasts.

Thanks to all of you who have provided info and encouragement along the way.  It has really really helped, especially on the bad days.

Hey, maybe I'll be so much better soon that I will have to change my screen name!  ha ha

db

[michael1028]

db, santana, and wonko,
  I have very distinct double vision. The images are very much separate. I would say that looking at images I use to mark my sight changes are about 6 inches apart. Sorry db I do not know the metric measure. Ha ha. I have used two things around the house as markers to see if there is any improvement to what and how I see. Dusk is very hard to see anymore. The faster things come at me the harder it is to see. In fact without a patch I cannot drive. I start getting sick to my stomach. My eye pain flares up through the day. I am still wearing prisms on my glasses, however they do not really help with anything over about 3 meters...(I know that one db about 10 feet+-LOL???). My optho is baffled as well. I am just trying to remain patient.
  Thanks again to all !! Your kind words and encouragement mean alot. I do find strength in your words. Have a great weekend. db so glad to hear you got that AC. Staying cool is very helpful I can so relate being here in Georgia. 94 degrees and 70% humidity on tap for the day. Stay chilled Y'all.
Mike        

[wonko]

Thanks for sharing how your vision is improving.  

I have only a slight vision problem, but it is such an annoying reminder that something just ain't right!  This may be a silly question, but how double is your vision?  Like, if you are reading on the forum, how far apart are the two images of letters?  I think of what I have as something around 1.25-1.5 vision.  The second image has a lot of overlap with the first.  Things far off look mostly normal (only things that give off or reflect light look strange), but reading, for about a month now, I see a second image.  I have no field defect, and my corrected vision is 20/20.  I also see flashing lights when I move my eyes (esp. in the dark), lit or reflecting objects have trails (like when they move, I see fainter images following), and I have intermittent, mild-to-medium eye pain.  My eyes have also been unusually bloodshot the last month or so.

My opthamologist had no clue why this was happening.  My neuro-opthamologist, who is also now my neurologist and quite possibly a saint (I had a great experience with him) looked at my eyes quickly, but said "Well, I can't say why it's happening so let's not worry about it right now."  I know that sounds bad, but from there he went on to discuss all of my other symptoms and reviewed my old MRIs and ordered new tests.

Very long story short:  I got so distracted by the rest of my appointment that I never really got any resolution on my eye issues!  He did order a bunch of tests, and I see him again in a couple of weeks, maybe I'll learn more then.  I guess I should just be patient, maybe he didn't react since my eyes seem healthy and the vision changes are minor?  

That ended up much longer than I thought, sorry!  But thanks again for the "diplopiers" thread.  I guess I fall about half into that category??

[santana8]

Hang in there, and keep hoping for the answer, I know it will come! Keeping you in thought and prayer!

~Santana~

[michael1028]

Your word are very comforting. I am still struggling to get through this like both of you. It is indeed frustrating. I have been stepping down on the steroids and will be off all "eye straighting" meds by Monday. Doc wants to measure me again wednesday. I am considering waiting a bit longer before I go back. I feel him looking at me and shaking his head with that , "I have no idea what is going on in your eyes" look will just make me feel worse. I will miss a day of work and be out about $60. tough descion to ponder over the long weekend.
Once again all the best to you both I am thinking of you both with the best of thoughts, hope you both continue to improve. You give me hope.
I will be in touch,
Mike    

[santana8]

I'm hanging and hoping for the best result for us all!   It is nice to have you guys who I know truly understand the huge impact that these vision problems take on our lives.  It is like I have told my husband, you would have to be able to see what I see to fully understand this! I wouldn't wish this on anyone, and I am amazed that I have had the inner stregnth to pull through it this far!

I would be lying if I said that I didn't want it all back to normal, but when I get down about it I try to think back to the beginning and how frightning everything looked for so long, and then I can feel thankful that it didn't stay that bad!  As long as I see changes, I have to hope, because hope is the only thing that keeps me going on!

I will be looking for updates from both you and Michael, and maybe together we can help eachother get through this nightmare we are living!

~Santana~

[doublevision1]

Thanks for your nice responses.  The three of us are very much in the same boat in terms of vision issues.  I will keep rooting for you both, as you have for me.  IAs you said, Santana, it seems vision problems often take so much longer to resolve than other symptoms, so hang it there.  I never thought I would have come this far, and am optimistic that things will eventually improve for you too.  It takes a huge amount of patience, not an easy task for those of us with a tendency to be impatient!

db

[michael1028]

CONGRATS my friend I am so happy for you. Your story has given me hope for my double vision. You and santana are special to me as it seems we have the same eye issues. GOOD FOR YOU !!!!!!!!!
  My neuro optho has taken me off all meds and now wants to remeasure my eyes. Whatever !! frustration has set in again. I am feeling what seems more numbness all over and even in some differnt areas. The sureness of the last two docs that this is not MS makes me even more frustrated. GGGRRRR!!!  
  Once again I am so happy for you. That is wonderful news. Thanks for providing me hope.
Good Luck, I hope that there is no relapes.
Mike

[santana8]

You are the one I have been watching so closely since I have been here!  Eventhough our vision problems are not identical, we do share some common things about it!  I have worried so much, wondering if they had only given me the steriods then the visual field defect and the slight diplopia on side gaze would have been resolved by six months.

After two years of healing and improving very very very slowly, I am starting to see that the only hope for a cure of problems like ours is time, time, time and then more time! LOL!!!!!

I started the Restasis a month ago and it is taking down the inflamation in my Meibomian glands in my eyelids, and seems to be stopping the deep eye pain that I have suffered from for two years, and I am so thankful for this, but the vision improvement has it's own schedual and won't be rushed by anything!!

I didn't get treatment at all, and my course of improvement is still, just like yours, very slowly improving over time. It seems that I see improvement about once a month!! I got all of my visual field test out the other day starting with the first in Sept, 2006, and the last about three weeks ago, and I can actually see that the defect is getting smaller and smaller.  I can tell by how much more of field of vision that I can now see, but looking at it on the test confirmed what I already Knew in my own mind.

I hope that for both of us and anyone else who is going through this that the slow improvements don't stop until we are back to normal or at least as close as we can get! You were so right about this testing your patients!!!   There have been times when I just sat and cried, thinking that I will be stuck this way forever, but with every little improvement, I find just enough courage to go on a little further, and to try to wait patienly for my brain to heal!

I am so happy for you and wanted you to know what an inspiration you have been  to me!!!

Your Friend
~Santana~

P.S.  If your double vision goes away and you have to change your screen name, maybe you could call yourself, doublevisionomore!!!

[doublevision1]

Thanks for cheering me on, Guys!


Wobbly, I'm not taking anything for my diplopia; there is no treatment for mine.  My only meds now are Copaxone and Neurontin.  My hope is that Copaxone will start to work for me and delay relapses that might further aggravate the underlying cause of my diplopia, which is a brainstem lesion.

The relapse that caused my diplopia started in Sept 2007 and I guess officially lasted about 3 months.  That is when most of my symptoms remitted or at least calmed down a lot.  Because of the extent of the damage done by the brainstem lesion, the diplopia is residual damage that is taking much longer to repair.

At least this is how it was kind of explained to me.  I still struggle with grasping when you figure out that a relapse is truly considered to be over, esp when there is residual damage done.

db

[Wobbly]

that's so good to hear, are you taking meds to help??  I have been about out of it lately and seem to not understand alot...

I read what you wrote...and understand that your sight is improving...?  is that because you are getting out of a relapse?  Sorry, not a good day for me..or should I say week....

andie

[Rena705]

I am SOOOOOOOOOO Happy for you my dear!  You have quietly suffered with this for so long and always still been available to support all of the rest of us!  KUDOS to you honey and I am glad that you shared this WONDERFUL news with us!

Lots of hugs!
Rena

[mercyone]

So glad your eyes are getting better - not being able to see "correctly" is difficult and that is putting it mildly. I am so encouraged when I read how others here are coping and improving as it gives me hope - when things are bad - there still is hope.

Mercy