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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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08-05-2009, 08:17 AM | #1 | ||
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New Member
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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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08-05-2009, 09:45 AM | #2 | ||
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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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08-05-2009, 10:06 AM | #3 | ||
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Quote:
take care. |
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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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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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08-05-2009, 10:14 PM | #6 | |||
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Junior Member
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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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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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08-06-2009, 03:53 PM | #8 | |||
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Senior Member
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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:
__________________
Erin . |
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08-07-2009, 02:34 AM | #9 | ||
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New Member
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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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08-07-2009, 11:57 AM | #10 | ||
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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 |
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