ocular MG; plz comment
 

Greetings to all!

My name is Tom and I'm 24.

I have several ocular difficulties that stay undiagnosed. My doctor suspects MG. I would like to ask those who experience this disorder the following:

1. I have difficulty reading, my eyes get fatigued very quickly; If I persist, the felling of strain and pain becomes evident
2. I'm rather sensitive to light and this sensitivity worsens with nearwork
3. I'm very sensitive to fluorescent lightning; the strain commes within several minutes...

Does anyone have the same or similar problems?

Thank you.

Best regards;

Do you have double vision or trouble focusing in and out? Although I do have the same things you worte, double vision and trouble focusing is my biggest problem. If your Dr. suspects MG have him do a tensilon shot test and see if it helps, I know when I had that test done it helped me right away {although very short lived} Good luck and please keep us updated, this is the BEST site I have found that helps support each other.

tnx, Joan: i must say that i dont have double vision; my biggest problem is eyestrain and related asthenopia (and photophobia). I was amazed by a simple test that i found in walsh and hoyt's. One needs to look upwards for several minutes; if ptosis occurs, this might be a good sign of MG.

take care.

tom mine went undiagnosed/misdignosed for over 2 years. the swollen appearance of my eyelids led to dx's of allergies and blepharitis. do you have problems with glare? almost a white out when looking toward the sun or a bright light source? you can have the antibody blood tests. they're expensive, 3X$200 ea.. you can do them one at a time in order of priority if you can't afford all at once. for ins. purposes, the suspicion of mg should be enough to justify at least an exam by a neurologist.
BTW, mine was finally recognized when additional symptoms presented during an especially bad bout of the flu. the flu symptoms went away but the mg symptoms did not. i understand this is common. the rarity of the disease coupled with remissions (i had many over 2 years) makes dx problematic.
the sensitivity to fluorescent light is very suspicious. i noticedthis early on, i'm a sign and lighting contractor. i spend a large part of my waking hours looking at very bright h.o. fluorescents. it was maddening. the white out thing too, driving at sunset was an adventure.

The main problem with my eye is the droopiness, I don't have blurred or double vision. My right eye immediately shuts when I go out in the sun. After doing some tests, my opthamologist says that my eyes are not sensitive to light, but I find that hard to believe. I didn't use to wear sunglasses much, but now I always need them in the sun.

Last week we vacationed in Branson, MO (Ozark Mountains). We have been going there 3 to 4 times a year for the past 11 years. While driving one night I was having a terrible time on the mountain roads. The glare off the road from the oncoming cars was blinding me. It was very scary, but there was no where to pull over.

tbarney that is almost identical to my early symptoms. the "no sensitivity" hit a nerve! my eyes would involuntarily close when he shined a light in them, he had to physically hold them open. i wear raybans and a hat and still could not face the sun w/o discomfort. since treatment with mestinon, all disappeared. eyes started back to normal with the first dose.

Motorhead, I have been taking Mestinon a little over a year, so it is not helping me to face the sun :(

wow, my eyes were the first thing to clear up. and on 1/3 of the dose i'm taking now. i should note, i've also had cataract surgery. i had fast forming cataracts in both eyes. i went from 20/50 to 20/200+ in a little over 11 mos.. surgery fixed that but my eyes refused to stay open and the sensitivity persisted. i'm happy to say i can now enjoy the work i paid almost $6K for. one thing i've learned here, it seems almost no 2 cases respond alike. i guess that must drive the neuros bat***t.

Hi Tom!
 

Hi Tom! How are you doing today? I, too had ocular problems; mainly with TERRIBLE eye pain, as well as problems seeing....it was really scary!:eek:

If they DO suspect MG, they will want to do several tests; the tensilon test, the "chicken" test - to test your strength, EMG, etc.......

It does take a while, but hopefully you'll get your dx soon and get on the RIGHT meds to help you feel great again!

I did notice that right after I started on the pred, my eyesight went back to 20/10, but it did take a while for my other symptoms to go away....

Hang in there! It DOES get much better!

You are so young to have to go through this, and I am so sorry, but you HAVE found the right place for people with MG! You are going to LOVE it here!

Take care!
Erin:D

thank you, thank you all. you are being very kind.

Yes, the glare/ bright light is a major problem for me. It's kinda weird, because the dx of MG; I find the thing by myself, browsing pubmed, science direct etc... and in a way, I will be glad if the doctors actually discover something in this line; I think the worse thing is actually not having a diagnose at all.

I'm scheduled fo EMG in a few days; I hope there is something there.

Best regards to all & take care.

Tom

Hi,
Mestinon didn't help my occular symptoms much either - but when i started the steroids they cleared pretty quick. I've never had pain associated with my eyes but I do find bright lights fatigue my eyes quickly and I too have become a sunglass convert (plus they hide the droopiness on bad days)! Certain flourescent lights bother me, but not others. Hope you are all well!
~Kathy

Hi Tom,

Welcome to the group! My eyes are very senstive to certain lighting and the sun. I don't have pain, but I do get double & blurry vision and ptosis. Any over use such as reading will cause them to tire which brings on any or all symptoms. Good luck with the emg and let us know how you make out. Take care.;)

Hugs,
Pat

interesting. photosensitivity seems to be generalised. the fluorescent and sunlight are especially interesting. that would seem to indicate an unusual sensitivity to u.v.. there is even one school of thought that claims unshielded fluorescents contribute to cataracts as much or more than sunlight. i wonder if this aspect has ever been researched or studied? caused me a few problems since lighting is my work.

It's kinda crazy...I never realized I had eye issues until I was in the hospital...I mentioned to the doc. that since I was 17 or so, I've been so sensitive to sunlight that my eyes would droop and sorta spasm and I couldn't get them open for maybe 5-minutes or so...This problem is much worse now...I have to wear sunglasses even inside sometimes...God, I'm realizing that I've probably had this MG for many, many years! I also had some twitching and a bit of facial weakness around the same time the eye-sunlight-sensitivity started...I always chalked it up to nervousness or fatigue! Too bad I never told the doc. about this long ago!

I've also always been very sensitive to fluororescent lighting...Couldn't stand classes that didn't have natural light coming through a window...Wanted to wear sunglasses, but didn't want to look weird...lol