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Ocular MG-- Does this sound familiar?
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Hammer
5 post s
22-Jul-2008
9:27 AM
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I have a question for those who have/had ocular myasthenia gravis. I saw the neurologist a week ago and she said that I did not have MG, then I saw my neuro-ophthalmologist last week and he also said he doesn’t think I have MG. After reading the posts here, I remain skeptical and feel it’s just a matter of time. Here’s my question: My only symptom is diplopia. I’ve had it for over a year. It has improved, very slowly, very gradually since May, but it has not disappeared. If I run, the vision is slightly improved. In the morning, my eye is really out of alignment, taking about 10-15 minutes for it to regain improved focus. Very little, if any, change occurs during the day. If I nap, the eye is once again out of alignment until I force it back. It appears that although my 6th muscle was the culprit a year ago, my eye tends to lean slightly inward instead of outward now. The heat is my friend and summer has been great in terms of how I feel. Again, no ptosis or other symptoms; strictly diplopia. Are these typical symptoms of ocular MG?
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Gail37
10 post s
22-Jul-2008
1:54 PM
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Hi! I have had diplopia for five years now in different muscles...variable direction and severity. Even different eyes. Two months ago, for the first time, my left eyelid drooped and closed. My neurologist says it is MG. It is generally thought that if you have ocular only MG for three years, it will likely not progress to the general but like everything else involved with MG, that differs with the patient. I have this spring developed weakness in my arms and legs that is noticeable. So now I'm thinking that it was there but I didn't notice the progression. Of course, I didn't know I had MG so didn't research it. My voice has also changed and my vocal cords tire when I sing. I am seronegative...MUsK negative...normal tensilon test...EMG normal...SFEMG normal, but my neurologist says I have MG and started me on prednisone. I have been taking it for 5 weeks now and the ptosis is gone and the diplopia is improved. Five weeks ago, I could not see in any direction with single vision, but now I can see straight ahead and up with single vision. I still have problems in the reading area and looking to right or left, but I am much improved. Like you, in the morning when I wake up, or if I nap, my eyes have to adjust. I did not think it typical of MG but again we all are so different. Unlike you, the heat is not my friend. I feel sick in hot weather and bright light really bothers my eyes. Are you negative to all the tests? It would be reassuring to have proof of ones illness but now I'm going on faith in my neurologist's diagnosis from symtoms and response to medications. Hopefully, there soon be a test for that last 15% who can't be proved to be myasthenic! You seem to be where I have been for so long. I hope you will be able to get answers as it is so distressing to know something is wrong but be unable to pinpoint it or to treat it. Good luck to you!
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Hammer
6 post s
22-Jul-2008
2:10 PM
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Thanks for the response. Yes, I've passed all the tests as well, giving all indications that I have something "other" than MG. This forum has alerted me to the fact that MG is so difficult to confirm and like so many that had false hope of it being something else, time confirms the inevitable. Since this forum is a forum of patients with MG, I understand that everyone has had MG confirmed. I suppose it'd be interesting to find out how many have followed this same path with different results? In my case I hear what the doctors say, but also listen to everyone here and have to prepare myself for the day when I wake up to ptosis and other more generalized symptoms. In the meantime, I am reseaching alternative treatments, like snake venom, stem cell therapy and anobolic steroids, so when it becomes necessary, I will have weighed my options carefully. I just ran 6 miles in 90 degree heat. My eyes felt better and I feel great at this moment. How long I'll be able to do this, I don't know, but I'm not giving up.
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JennyH
6 post s
23-Jul-2008
12:56 AM
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Hammer
Have your neurologist/neuro-opthalmologist given you reasons why they don't believe your symptoms to be attributable to MG? Fixed diplopia such as you describe is not the 'textbook' presentation of MG but does not rule it out.
My first symptom was sudden onset of double vision which did not seem to be fatiguable and which lasted for about 2 weeks before gradually improving. I'm seronegative and EMG and SFEMG results were only borderline. I did not develop ptosis until 3 months after my initial symptoms and it has never been as frequent or noticable as the diplopia. I've had many episodes of diplopia over the past 3 years, some came on gradually, some suddenly. I,like you, have had worse double vision on waking which takes 10-15 minutes to clear. This has always puzzled me as you would expect vision to be at it's best first thing when the eyes are most rested. I've had flare-ups of double vision which sound exactly like yours, they just have not lasted as long.
Obviously it is impossible to say whether your double vision is due to MG or not. I guess you have to keep an open mind, it may be that only time will give you an answer.
Best wishes.
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Hammer
7 post s
23-Jul-2008
4:57 AM
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Jenny
It’s amazing how similar our symptoms were. Let me ask you this, you said that your diplopia was a sudden onset, but what about the improvement/remission? Was that as immediate or was it very gradual? In my case, I was fitted with number 30 stacked prisms, which I felt were too strong. When I removed the glasses, the diplopia was so messed up that I immediately put on another pair. It was hell, to say the least. In May of this year, I got so tired of the prism that I removed the glasses while at work and essentially ran my finger along the wall to steady my walk. I also removed the glasses during my run, which was almost suicidal, but I was determined not to wear those prisms. I also embarked upon a program of supplements, which include DHEA, pre-hormones, vitamins B-12, Vitamin C and a vitamin multi pack, plus Creatine Monohydrate. In two weeks my vision had improved noticeably (I understand that if I was in a state of remission, this parallel series of events were merely coincidental). I went to see the optometrist who fitted me with the prisms in the first place. She prescribed a 22 prism in May. I walked out and drove home with regular prescription glasses, no prism. So for about three months, I’ve experienced improvement, although not normal vision. My straight gaze is better, and my side diplopia is “bearable.” So now, about 14 months from my initial onset of diplopia, I’m basically at square one with the same degree of visual distortion.The neuro-opthamologist and neurologist both agree that my symptoms do not lead to a medical conclusion of MG. Like all of you, the extensive workup was negative. Mestinon did nothing to relive the diplopia and since the only symptom over a year has been diplopia, they both feel that if the symptoms worsen that they want to check for intracranial pressure by doing a spinal tap, otherwise just wait and see. I am not convinced and like I said, feel that it’s a matter of time. I am proceeding under the presumption that if I am in remission, then I may be able to encourage my body to continue to correct itself through the massive amount of supplements and exercise.
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JennyH
7 post s
24-Jul-2008
1:40 AM
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Hammer
Sometimes my double vision can come on very suddenly (I may wake up with it or it can worsen over the course of a day), sometimes it's onset is more insidious. However any improvement/remission tends to be more gradual, perhaps taking a week or two, perhaps longer.
I have tried to identify if any factors trigger relapses and remissions but to be honest I don't think there's much I can do to influence the course of the disease. Obviously I try to eat healthily and am lucky the the weakness is currently restricted to my eyes so I am able to exercise. I admire you for continuing to run. I try to cycle but find it quite difficult with one eye covered!
At the time of my initial symptoms I had a lumber puncture to rule out raised intercranial pressure (also normal!).
Despite all the tests I have had, I don't believe anyone thought my diplopia was due to MG until I mentioned the very slight ptosis I was experiencing. I think it can be very difficult to spot cases of ocular myasthenia that do not present in the 'usual' way without a lot of experience.
Last Edited on 24-Jul-2008 1:41 AM
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Hammer
9 post s
24-Jul-2008
4:11 AM
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Hey Jenny
Is my understanding correct in that you have not had any laboratory tests confirming your MG, just clinical observations? Granted, certain observations are probably more conclusive, like a combination of diplopia, ptosis, periods of remission; all of which are moving targets. Are you currently taking anything? When you have the worse periods of diplopia, have you ever had your eyes checked to see how much correction would be necessary to trick the offending eye into visual alignment? My worse period was 32, but I look back and question that reading now. When I ran with a patch on my eye, I had zero depth perception which caused me to concentrate so much on not falling that it made the run seem twice as long and taxing. I dreaded the run. Have you ever thought that maybe you do not have ocular MG and that something else may be the cause?
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JennyH
8 post s
24-Jul-2008
6:06 AM
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I've had no test that has confirmed beyond doubt that I have myasthenia but I, and my neurologist feel that my clinical symptoms are highly suggestive of MG. I've had acetylcholine receptor antibody test that was a high borderline. EMG showed a slight decremental response in some muscles and SFEMG results were slightly abnormal but it is not enough to be certain of the diagnosis.The combination of diplopia (which has involved diiferent extraocular muscles on different occasions) and ptosis is typical of MG. Also it is my understanding that ptosis which alternates between each eye is quite characteristic of myasthenia.
I currently only take mestinon although not that often as it does very little to relieve the double vision. I am waiting for a referral to another neurologist to seek his opinion but I feel that immunosuppression is probably the way to go for me. Since the beginning of the year I've had double vision severe enough to require an eye patch for about 40% of the time.
I've only had the degree of misalignment measured once during a period of time in hospital. The double vision I'm currently suffering is probably the worst I've had as I, and others, can see that my eyes are not facing the same way. I almost reach a point where it doesn't matter if the diplopia gets worse as I can't see properly using both eyes anyway.
Last Edited on 24-Jul-2008 6:07 AM
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chairman
MGA Chairman
799 post s
24-Jul-2008
10:21 AM
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Jenny Your case sounds much like that of my daughter. She started with diplobia and ptosis - no other symptoms of MG. The initial diagnosis was done by a consultant optician. Mestinon did very little for her. Negative antibody tests. Went on immuno-suppression (prednisone + azathioprine) - very effective. MG became generalised about 13 years ago following a hiatus in the azathioprine therapy. Now usually in drug-induced remission. Eventually antibodies detected (about 15 years after initial diagnosis). This proves nothing except that any 'rules' about MG diagnosis and treatment will be immediately proved to be wrong :-).
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 Peter Finney
MGA Chairman
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