Double vision bad!!!
 

The last week has been really bad, I can barely ready as my vision is almost always doubled. I have a consult tomorrow with a surgeon to discuss the thymectomy but I don't know how I can deal with this vision. I can't read, I cant watch TV, I cant drive. Its not even the eyelid, its just the vision. My hands have even been really good this week, and I am a computer programmer so I use my hands typing all day. This sucks, any ideas what I should be doing? 90mg Mestanon every 4 hours, 20mg prednisone every other day, and 180 Mestanon at bed time and its almost always double vision this week!!

Regards,

John

Sounds like you need more meds. THe pred sux, but it really helped my vision.........

Hope you get some good news tomorrow!

Hang in there!

:hug:Erin

Hi John,

I remember when I had double vision constantly for almost 2 weeks, before I was diagnosed. It really is very hard to live a normal life with dv.

It sounds like you need to speak to your neuro, (or other specialist you see), as double vision usually leads to other weaknesses rearing their ugly heads.

I hope all goes well with your surgeons appointment, and with sorting out your double vision.
take care
redtail

Hi John,

I agree with Erin - the pred was about the only thing that has helped my double vision. I'm at 40 mg every other day and my neuro won't let me reduce any further for the foreseeable future. I found that I sometimes get some relief if I put a cold cloth or compress over my eyes. It seems to help relax the muscles and then I can focus more easily. I don't think there is any scientific proof for that, but it helps me on occasion so you might want to give it a go! Good luck - double vision is NOT fun!

~Kathy
(enjoying a snow day off school, but sad because her trip was cancelled for tomorrow due to the bad weather - hopefully leaving on Wednesday).

Everything is very new to me. I am just reading your experiences, trying to understand what is happening to you, and what MG is all about.

Does anyone notice that watching TV seems to trigger a vision problem? Just wondering what your experience is with that.

Thanks alot, and best wishes to each of you.

First round of IV IG done......
 

Hello all! Just got home a while ago......I am tired!:(

The PICC guy showed me how/why it is so hard to get to my veins...they start out beautiful and round and die after about 2 in.......yuck!

However, he was able to get the line in under 10 min - talk about a miracle!

Mike was there with me all day. The best part is that we are still ablw to drop Devon off @ school and then head for the hospital.......I should be home b/4 my son gets home.

The guy joked with me about always being sick - he said the CDC should be on the lookout for me! LOL!:D

I'm gonna go for tonight and drink lots of fluids!

I hope all of you are doing well! I miss all of you!

Erin:D

Hi Kellymg,

when I was having problems with double vision, if I was watching tv, and didn't have it at that moment, after sitting watching tv for a while it would start up.
I would end up watching with one eye covered up, it was very frustrating.
Hope this helps a little.
take care
redtail

That does help, thank you, redtail.

I am not sure what anyof the weird symptoms mean, so it help alot when you tell me it happened to you, too.

I just usually find myself questioning what is happening, or if I am even really experiencing something to begin with. I am over 40 now, and they say the eyes get wonky...

I noticed I have been putting my hand over one eye to watch late at night. I usually just hurry up and turn off the TV so I can just ignore it! :)

Thanks for sharing. I appreciate it.

Like many of us Double vision effected me first mine has always been their they say seeing is believing but when a car passes you once and then again thats scary ........................
if the weak eye is working hard then its going to get tired
mine got really bad when i went on Pred's but has settled back
it is always good to know others are able to reassure you its certainly has me Alan

Me, too!
 

When it was really bad, I couldn't watch TV, drive, anything. I did notice that putting a bag of ice on my eyes seemed to help. In fact, my neuro had me put a can of soda on my eyes to check for MG.

It is hard, but the sooner you get your diagnosis and meds right, the sooner you will feel better.


Don't give up and don't ignore your symptoms. There is a lot that can be done for MG now!

:hug:Erin:hug:

double vision
 

I am newly diagnosed, I have had double vision like twice, does this usually get worse as the disease wears on? Does generalized MG mean you are getting worse?

Ocular MG means it only affects your eyes, and I have met one man who had this.

Generalized MG means it affects everything else, ie swallowing arms legs etc. I have left an answer in you post, so rather than answer twice I will let you read that, if it doesn't answer you questions, please feel free to ask more. I'm sure someone here will be able to help you.

take care
redtail

Meds! Meds! Meds!
 

I had problems seeing for 6 months before I was diagnosed! The only thing that helped me was Prednsione.......The Mestinon did not do it for me. My eyes were literally rolling around in my head - too weak to focus - my hubby had to drive me the last few months, as no one really believed how weak I was............

If the meds do their thing, your vision will clear almost immediately - @ least it did for me!:D

Erin

So I had my Thymus removed 5/1/09, and it wasn't fun but i am not fully back to work and pretty much back to normal. However this last week my symptoms have been really bad, especially my vision. I was just stepped down from 35 to 30mg of Prednisone by my nero. I am also on 500mg CellCept 2x's a day, 4-5 60mg Mestinon a day, and MultiVitamins.
This week I have had really bad double vision, and been pretty symptomatic all week. I must say its pretty sad to go through the pain of surgery and see no short term benefit from it!! I am thinking of getting another round of IVIG, but I dont know if I can take the time off work to do it. Is there any other treatment schedules besides the 5 visits in a week plan? Thanks!

Regards,

John

oh yea
 

Forgot to mention that I did get a call from my Neuro on Thursday, apparently my white count is a bit elevated. I went in for a urine test, and will be going in for another blood test next week. Not sure if that is relevant, but fgured I would include it in the intrests of full disclosure. Thanks!

Regards,

John

i had dvision luckily longer distance like driving and walking. have you ever tried a patch -i was ok driving if i closed 1 eye. not the safest but when it was constant it worked until i started on meds. good luck!!!

John,

The thymectomy is not for short term gain. Your body still needs to heal back the damage that it has done to itself before you'll go into remission. You're looking a year to three down the road for the thymectomy to do everything for you that it is going to.

I didn't have to deal with double vision with my MG and not to sound glib, but have you considered an eye patch for when your vision starts to split? Obviously you still need to find the right drug cocktail to control the symptoms, but something on hand to deal with the double vision right away may be worth having.

Best of luck

Cheers,

Brian.

John,
I have double vision also, ALL the time, I find if I tilt my head to the side it helps a lot. I was also a computer programmer years ago but with my vision problem I gave it up. I now can do just about anything because I have trained myself, so to me it is like single vision, once you live long enough with it you become adjusted {30 years} . I hope yours eases up soon.

I think i experience double vision about 75% of the time...which is very annoying, but i'm not sure what else can i do. I've done all the treatments and i'm on prednisone, and imuran now.

Tracy

i feel for you.it must be so frustrating-my dv was only walking and driving after 1 pm. i also closed 1 eye and that seemed to help 75%. has any one suggsted a patch? it took 2 wks on mest for it to clear so hang in there-something will work! hope it's a good day for all! have a great 4th of july w/e!!:grouphug:

I'm on prednisone, and have been for years...so i think my body is immune to it. It doesn't help with my double vision at all. I did receive my cPaP machine last week, so hopefully this will help with my breathing.

Glasses with Prisms
 

I have been having trouble with dv for the last few months. I was wearing a patch to drive and work on the computer.

I spoke with the eye doc and he said that prisms in my glasses would probably help, but it had to be my decision.

I tried using IVIG to see if it would make a difference, but no change in the vision (energy level much better - I've been on IVIG for about 4 years)

I finally caved and went back to the eye doc and they spent about 2 hours trying to get the correct level of prisms. Think about it, do I get the prism to correct my vision at Noon? 1:00 pm? 4:00 pm? - it's get worse as the day wears on!
We settled on 4:00 pm (I see 2 of everything, one above the other, no overlapping, etc)

I got my new glasses last week and they really work! Of course, I can't wear them until the dv gets bad (usually around noon), but they definitely correct the dv.

I thought they would look like big googley eyes, but they don't look at different from my regular glasses, just a little thicker. For the first couple of days, everything had a band of rainbow light around it, but my eyes have adjusted and I don't see the rainbow any longer.

They were expensive, but fortunately I have vision insurance and they paid all but a small portion. My glasses are expensive anyway because I have bi-focals and I add glare reducers, etc.

Just wanted to let everyone know who has dv for a while, there is a way to fix it so you can continue to work.

I also have prism in my glasses, and my sunglasses...and it doesn't help me at all. Don't get me wrong i'm MuSK Positive...so i do believe i'm a little harder to treat than most.

Prisms?
 

I read a couple of posts that mentioned prism's help and I am is the process of investgating. Going to a Neuro-Opthamologist is a few weeks (not a regular opthamologist)

I am in the same boat as you. Double vision is bad. Work involves computer a lot and I generally like to watch TV. I have been using a patch at home. While driving I blacked out one of the lenses on sunglasses w/ electrical tape so I dont have to run around looking like a pirate.

Always wear my sunglasses outside and rest my eyes as often as possible.

Looking from Neuro-Optha something that will cut the glare down and possible prisms. I noticed something interesting with a test I conducted. Take your hands and make let like binoculars (i guess you could use two toilet paper rolls too) It seems like when I block my peripheral vision that i have no double vision. Not that you can walk around with toilet paper rolls attached to you gead but just an observation. When I tunnel my vision it seems to help though. May looks for sunglasses that block the sides.

Anyway, go check with a Neuro Optha - I am!