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I was fortunate that my MG was in control with mestinon. But a few weeks ago, I had a lot of stress, and my one eye started drooping, and I had double vision. The only way I could drive was to close one eye, or tilt my head backwards to see through the drooping eye. I struggled, but managed to drive. We have a local WhatsApp group, and I was advised to start taking prednisolone to suppress my immune system. I also increased my mestion. It seems to have helped me, as my drooping is not as bad. I’m now still taking 20mg pred. Daily. It’s like guesswork in treating myself. I only see a GP,
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Dev, when my diplopia got that bad, my neurologist put me in the hospital for five consecutive days of IVIG treatments. Two days after I left the hospital, my diplopia “magically” disappeared, and it has not returned. (I’m on prednisone and azathioprine.)
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My diplopia was so bad when I was first diagnosed that I couldn’t drive without closing one eye. I started wearing an eye patch but that means driving with significantly impaired depth perception, which meant staying out of freeway traffic. It took a few months of higher doses of prednisone before it resolved.
The diplopia has been the canary in the coal mine for me. It told me when I was reducing my prednisone too quickly. I am now down to 10 mg, but that took several years. Only the smallest diplopia now.
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I’m one of those rare MG patients who, thanks to my wife’s tenacity, got onto Soliris infusions every other week. Along with mestinon regimen, my diploplia (first sign I had MG two years ago) is fairly well under control with a few caveats: 1) if I forget to take mestinon or get stressed, 2) late in the day, watching television, I get to see two of everything. Even though I’m 74, I decided to get a robotic thymectomy with Dr. Louie (Seattle, Swedish Medical Center). Still waiting to see any changes…could take up to a year or longer but worth the risk to me.
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I experienced diplopia on and off for several years before I was diagnosed with MG in 2019. During those episodes I wore an eyepatch, and found that within a couple of weeks my body was compensating for the double vision—at least it was more of an inconvenience than anything else. The only problem I experienced with driving was pulling up to any drive-in window or ATM; being aware of the loss of depth perception I was cautious and often found myself too far from the window to reach it without opening the car door. I had no trouble at all with driving on the Interstate. In January 2021 I suffered a Myasthenic crisis with multiple symptoms. I was hospitalized for 14 days (3 of them on ventilator), had the 5-day IVIG treatment, and added Azipriothin and prednisone to my pill regimen. After discharge from the hospital I increased the AZ by 60mg per month until I reached 300 mg per day. I also began cutting back on the prednisolone by 10mg per month until I no longer needed it. Over a period of six months all the MG symptoms began disappearing. The diplopia went away in the third month. So far things are holding, with no symptoms at all for the past 7 months. Thank God! My prayers for all who are dealing with MG, and especially diplopia.
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Diplopia, comes and goes at any time. My balance also horrible. Was in the hospital for low back injections. Had to wait 2 weeks because of staffing shortage. They had me on Hydrocodone for over 3 weeks, now I have depression also. Is there anything that can help with my MG???? Please.
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When I was diagnosed with MG I thought I was the only “One” who had trouble driving.
In the beginning I was pulling off the road almosr everyday and closing my eyez for a while. The rest last maybe half an hour.
Walking down a street was a chore. I felt I looked drunk.
That began in 2009. My neurologist sent my to an ophthalmologist who specializes in mg patients.
It’s 14 years later, the neurologist is gone the ophthalmologist also.
My office was about 45 miles from home.
My vision impairment and muscular weakness getting worse I sold our chemical business.
I’m on plasmapheresis once month, a steroriod 3 timesa day and gabapentin.
I sure would enjoy the mg symptoms leaving for awhile.
If anyone knows a solution ease give me a holler
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I had severe diplopia while in the ICU during my myasthenia crisis, but it mostly cleared up after five sessions of plasma exchange (Plex), Now my eyesight is limited more by ptosis that has not gone away completely with my mestinon regime, Also – when I get tired I still have trouble holding my head up or looking around to sharp angles like you need when entering traffic. I am not driving yet (three and a half months after crisis) but hope ptosis or neck control will improve enough to let me get back to it in time.
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I can relate to all your difficulties. I had terrible double vicion before I had my Thymectomy. I fell over stairs and down stairs. They just did not exist. I did not have a choice when it came to the point where I had to decide whether to have the op oor not. It had formed a huge tumor behand my breastbone and during op a partbof my heartsack was removed also. It had grown into the sack. About a month after the Thymectomy my double vision vanished. The light sensitivity stayed. I kept wearing my dark glasses wherever I went. Church, mall, movies, indoors. It got better but six years later, beginning of last year, it came back. Double vision, tiredness and now depression also. I am taking 60mg Mestinon 3 times a day and 50mg Azanum once a day. I suffer from leg cramps and sometimes my magnet helps but my GP prescribed Aspin Quinine Sulphate Tabs 300mg. I can only take this 3 consecutive days at a time but it helps a lot. Ad soon as the cramps return, last time took about 7 days before I had to takev it again. My GP is a Homeopathic Dr also and for my depression he described Lithium Orotate. This is a wonderful pill and keeps me chirpie through the day.
This, I hope, will help someone. My diplopia is only realy evedent when I am very tired. I think I am blesses?
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I do have diplopia, more severe in one eye than the other and double/blurry vision over 50% of the time.
The thing that helps me the most, although much less than ideal, is to hold my eye open while driving. I was on up to 800 mg of Mestinon a day and that did not even help with my vision.
I had an MG crisis and my meds were changed to 50 mg of Azathioprine with 60 mg of Mestinon up to 4 times a day. This has dramatically helped my generalized MG symptoms of weakness in arms and hands and fatigue, however, the problem with my diplopia and vision has not improved at all.
My opthalmologist has suggested a short course of prednisone, but my neurologist has refused to give this a try. I am in search of an appointment with a clinic (Mayo, Cleveland, etc.) for better help with my MG with doctors who have more experience and knowledge of the symptoms and treatmenst.
My very best to you in your search for help with your vision!
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I started with mestinon immediately on diagnosis but it wasn’t until I had been on prednisone for several months that my diplopia and ptosis finally resolved. I get the sense that mestinon alone isn’t very useful against ocular symptoms.
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My neuro wanted to try the mestinon first, because prednisone is a two edged sword. After a few weeks she started me on a regimen that ended up at 60mg a day for several months and started tapering off. I am now at 10mg and still going down.
What can I say? It worked very well for my myasthenia. But it aggravated my blood sugar, made my skin easily torn and bruised, made me more aggressive and made my wife harder to get along with. 😉 It hasn’t affected my bone density but it often can.
I think I’m on the right track for myself: high dose prednisone concurrent with immunosuppressants, then tapering off the prednisone after the immunosuppressants have had time to work. Cellcept, for instance, may take from 6 months to a year to take effect.
Overall the benefits have definitely outweighed the side effects. But as they say, your mileage may vary.
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I’ve had gmg since 2013, I am 69 now. Had my thymus removed 2014. I get a Soliris and IVIG infusion bi monthly, 180mg of mestinon SR, 2mg prednisone daily. When my mg flares up I take up to 720mg mestinon SR and 10 mg prednisone daily. High doses of Prednisone does not agree with me. I have had double vision from the beginning, it comes and goes, At first I wore a eye patch as needed for driving and all other activities. 4 years ago my optometrist fit me with a glasses that had prisms in them and it works. I can’t drive for long periods of time but 2 or 3 hours is fine now. 2 years ago I drove down to Arizona from Oregon pulling a 28 ft trailer averaged 7 – 8 hours driving a day with breaks. It is a moving target for me but still manageable. Hope this Helps.
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My MG started at age 66 with diplopia which caused some problems with driving. I used a patch (not so good) and then glasses with prisms (fair) for several years driving from Maine to TX twice a year. Then I had eye surgery (essentially the same as for children’s strabismus). After the surgery I have had no diplopia problems and no problem driving now for about 8 years. Now at age 80, my myasthenia is essentially asymptomatic while taking only 10mg prednisone every other day (=5mg/day) and one or two 60mg pyridostigmine tabs a day. About 7 years ago I was started on azathioprine, but after 2 months on it, I developed jaundice from its liver toxicity and went back on the prednisone.
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Hi John,
When I had diplopia, I had to use Nexcare Opticlude bandages to be able to walk around and drive. A patch did not work nearly as well. And my neurologist is guiding me on tapering down the prednisone — right now I take 10 mg or 7.5 mg on alternate days. He has mentioned that I may end up with some dosage on alternate days that is similar to the amount of cortisol that is normally produced by one’s adrenal glands.
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Hello, I have both horizontal and vertical diplopia. I was lucky to be referred to a wonderful and very patient neuro-opthalmologist and occupational therapist. Initially I had no idea I was seeing double. I was just super dizzy, had trouble walking and driving and also had light sensitivity. I was compensating by closing one eye and tilting my head until that stopped working. I tried patches and tape over one of my eye glass lenses. I would only see one image, but it gave me such an awful headache. The neuro-opthalmologist fitted me with prisms, but my eyes were constantly changing depending on how much I had been using my eye muscles to read that day. Working at a college library meant I was reading a lot. I started seeing OT to learn a few tricks to help me continue working. The best advice she gave me was rest my eyes and shopping at big box stores would be difficult. Your eyes are constantly scanning the shelves looking for items while your brain is trying to make sense of the double images. I would have these panic attacks every time I went grocery shopping and didn’t know why. I also attended a number of sessions at the Dizzy and Balance Center to improve my walking. I would weave when I walked. It also helped. I stopped driving at night almost immediately and try to limit my driving to the morning hours when my eyesight is at it’s best.
Things I found helpful:
I wear the darkest sunglasses I can find, sometimes even under bright lights indoors or a hazzy day.
Palming My eyes (OT technique for resting eyes, improving blood flow to eye muscles). I have used this technique on long roadtrips.
Using computer sofware for composing and reading (iphones and IPads with the newest OS have some nice accessibility features including text to speech)
Books on tape
Prisms – some days they work, some days they don’t
Dizzy and balance training by a certified therapist.Amy
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My very first encounter with MG before I was diagnosed was a very interesting experience. I was standing at a bus stop in Las Vegas waiting for a bus. After a while I leaned over and peaked out of the shelter to look down the street to see if the bus was coming and WOW!!! There was not 1 bus, but 2. One in the curb lane and one in the middle lane. No fuzzy presentation. They were both crystal clear. I thought to myself, “Hmmmmm, which bus should I get on?” In a few seconds only 1 bus pulled up to the bus stop. Not knowing that I had MG, I was astounded. A week later I had a Full Monty myasthenic crisis with every symptom of a full blown, full body stroke; couldn’t walk, talk, speak, use my hands, couldn’t swallow. I mean the whole 9 yards. Now a few years later I have both ocular and generalized MG. In the past 5 years I have been hospitalized with a myasthenic crisis 7 times and have coded twice. My ocular symptoms are daily. By evening I can’t read or watch TV. I am on 300 mg a day of mestinon, bi-weekly IV/IG and 150 mg a day of Azathioprine.
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The eye patch was the only thing that worked for me for driving, watching tv, reading and working. I got an eye patch from the eye Dr that hangs on your eyeglasses. I would switch from left to right throughout the day so as not to put all the stress on the same eye. Once I got meds right I don’t experience it any longer.
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My eyes have been progressively getting worse. I can barely keep them open. They are red, swollen, painful burning, & feel like there is a ton of grit in them all the time. Occasionally I have double vision, it is more blurry than anything,& I do wear glasses. I do cold compresses which give me relief for a short time. Does anyone else have these symptoms also?
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Maureen, that’s where my eyes get to late in the day. Burning, can’t keep them open. I keep a eye mask in the freezer. It helps the burning but not the inability to keep my eyes open. I have found another issue with ocular MG. Recently I have been hospitalized AGAIN for an MG crisis. When the doctor does the follow my finger routine, my eyes get so exhausted within less than a minute that I have an ocular crash!!!
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Hello Maureen- it sounds a lot like the symptoms I have with my Sjogren’s dry eye. You could try a warm washcloth just in case your tear ducts are blocked. I see a neuro-opthalmologist twice a year. She helps me with both my MG eye symptoms and my dry eyes.
I also tell folks with dry eyes to ask about punctal plugs. Hope this information helps.AmyB
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Thanks for all sharing these insightful experiences. I can identify with many of them. Until I got more control through mycophenolate (cellcept) I had some critical incidents driving that left me scared, especially while on the freeway at night. It was enough to keep me away from driving at night under those conditions–the glare, the multiple lights enhance all the problems. I also struggle with dry eye, use multiple drops and see a neuro opthalmologist and now put my own serum tears into my eyes which bring some relief for the dry eye. It is costly though. It is very important to keep on top of the day to day changes and even different times of the day which MG brings and how it affects driving and to avoid driving when unsafe. Sun glasses are extremely important as well. I have pulled over and asked someone else to drive when I felt unsafe, or limited night driving or freeway driving, etc.
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Thank you everyone for sharing. I would like to find a neuro-opthalmologist.
I am not comfortable driving at night anymore yet I am the safest drive of my friends!…go figure!
I don’t drive downtown/Los Angeles at night anymore. IT’s just too difficult to see with blurred and double vision even with my current lenses.
I do close one eye sometimes to see better…it’s amazing how my eyes appear almost closed yet I can see out of them during the daytime.
Around 4pm or sometimes earlier my left eye closes completely…it’s just too difficult to keep open.
Maybe I should try the patch…except that I live with my mom and she would wonder…haven’t told her at this point.
I do worry about losing my vision…as I am having to change prescriptions more often.
Does anyone use those glasses that hold up your eyelid? Do they hurt? How long did it take to get used to them?
Is there any research on people with myasthenia who also use a CPAP machine>? Are they at higher risk for a crisis?
Thank you everyone for sharing your stories and thoughtful suggestions.
Sincerely, michele
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