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Old 08-05-2009, 08:17 AM #1
ilcraque ilcraque is offline
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Link 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;
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Old 08-05-2009, 09:45 AM #2
Joanmarie63 Joanmarie63 is offline
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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.
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Old 08-05-2009, 10:06 AM #3
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Quote:
Originally Posted by Joanmarie63 View Post
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.
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Old 08-05-2009, 10:45 AM #4
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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.
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Old 08-05-2009, 09:43 PM #5
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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.
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Old 08-05-2009, 10:14 PM #6
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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.
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Old 08-05-2009, 10:17 PM #7
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Motorhead, I have been taking Mestinon a little over a year, so it is not helping me to face the sun
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Old 08-05-2009, 10:41 PM #8
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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.
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Old 08-06-2009, 03:53 PM #9
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Cool 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!

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




Quote:
Originally Posted by ilcraque View Post
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;
__________________
Erin
.
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Old 08-07-2009, 02:34 AM #10
ilcraque ilcraque is offline
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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
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