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Driving with Myasthenia gravis: How often does it get in the way?
Driving with myasthenia gravis isn’t always straightforward. Some people feel comfortable behind the wheel most days, while others struggle with symptoms like fatigue, double vision, or muscle weakness that make driving unsafe or not possible.
For many, it’s a day-to-day decision requiring adjusting plans when symptoms arise.
What percentage of your days with MG have symptoms prevented you from driving?
Whether it’s 5% or 95%, we’d love to hear what that’s looked like for you, and how you’ve adapted your lifestyle to accommodate this barrier.
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16 Replies
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I have been coming down with double vision symptoms about once a year. Each spell lasts about a week. Usually a stress element that’s involved that triggers. My ongoing symptoms are limited to my mouth, affecting my speech. Pyridostigmine and low doses of prednisone and a new one, mycophenolate keep it in check. I guess the mycophenolate is supposed to take the place of the prednisone in a few months, as my neurologist doesn’t like the long term effects.
As far as driving goes, I have found a couple of strategies that seem to work OK. Driving with one eye shut is the easiest but introduces depth of field issues. The second is that I have noticed that my left eye is the one that goes “astray”. If I turn my head slightly to the right, it lines up that eye with the road and driving around town isn’t that bad.
If I was needing to drive a few hours with an episode under way, I’d probably think about postponing.
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Christer, thank you for sharing your current situation. It’s been a while since we heard from you, and while it’s great to receive an update, although I’m sorry to hear about your struggles. Your description of driving sounds very familiar. Iremember being in the same situation, closing one eye to see better, but finding that each day became worse and I needed adjustments to see adequately. I’m sending my best wishes that your treatment will start to improve this critical issue. -Jodi, Patient Advocate
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So far, I have not had any issues with driving because of MG. My symptoms before being diagnosed were speech problems and swallowing. Thankfully, I have not hand any issues with my sight.
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I haven’t driven except for a 3 month spell when double vision lessoned after it first came on in May 2023. I have all the body symptoms, get the throat symptoms mid way through meals, can’t talk for long periods, couldn’t walk when I got up from seated position or out of bed in morning and double vision now 75% of my day. One of my ugliest symptoms appeared in March 2023 when my husband found me on the kitchen floor. I was there at least 6 hours and “woke” up altered. ER here we come. They didn’t know what caused it…blamed it on my meds. Tested me for a few days, made some med adjustments and sent me home with oxygen since I failed the walking o2 test. I couldn’t drive until we knew if that was going to be a single occurrence or not. Then the double vision came on. I was able to go without oxygen 6-7 months later, but then after the 3 month period mention in the beginning, double vision came back, trouble breathing started, etc etc. Now I’m on full time o2. When I take it off my numbers go down to 80’s, sometimes upper 70’s. I’m wondering if I will ever drive again. I just started CellCept last week. Coming down off of 60mg Prednisone. Prednisone made body symptoms better, but not my eyes. I get my 5th Ivig infusion next week.
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Tracy, thank you for sharing such a detailed and honest look at what you’ve been through. It’s great that you’ve taken the leap to participate in discussions. That March episode sounds terrifying, and it’s understandable why driving has had to take a backseat for the time being. The way you’re navigating meds, oxygen, and infusions while still trying to figure out what’s next is incredibly tough.
How are you feeling about starting CellCept? -Jodi, Patient Advocate
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So far so good. I’m titrating up 500 mg every week. Thursday/tomorrow will be week 3.
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I had some double vision when I was first diagnosed in 2019 which disappeared once treatment started. Six months later, I had to switch from Mestinon to Cellcept because a Mestinon side effect was making my lower eyelids twitch so bad I could barely see when I was driving. I still use Mestinon on demand as augmentation to control occasional MG symptoms, but never for more than a couple days to avoid the twitching side effect.
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Hey Sharon, it’s good to hear from you after several weeks. That sounds so frustrating, trying to manage vision symptoms while driving, only to have the medication side effect make things worse in a different way. It’s cool to hear you’ve found a balance using Mestinon only as needed. Has CellCept been a better long-term fit for you overall? -Jodi, Patient Advocate
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Im having a flare. Double vision is bad. I have to put a patch over 1 eye if I want to see anything. I’m in week 3 of double vision so my son and my companion have been taking me to my appointment. What a pain. I had my third infusion for the second series of Vyvgart. After I finished the first series I was off with no appointment for 13 weeks. I’m back doing the second series with the flare and is like starting all over.
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Hey there! It’s so nice to hear from you again, even if it’s during this tough flare-up. We understand how draining it can all be, to need a patch for weeks and depend on your son and companion, it really can feel like losing a bit of your independence. I’m crossing my fingers that getting back on Vyvgart will provide you with some relief soon. Here’s to hoping this second series gives your body the boost it needs!
What’s been helping you stay positive day to day while you wait for the infusions to kick in? -Jodi, Patient Advocate
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Double vision became a significant problem for me after my diagnosis in 2016. As far as driving, I found that if I tilted my head back slightly my vision would correct itself.
More significantly, my double vision corrected itself permanently, after switching to “Gammogard” IVIG (from “Privigen”).
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That’s so encouraging to read. Sending good vibes your way! -Jodi, Patient Advocate
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During my 1 and only double vision remission so far, I did all those tricks, including blinking away the double vision. Now, my right eye sticks so often, the tricks don’t work anymore. Hopkins did a detailed analysis to see if prisms would help, but the eyes go in and out and are too variable.
Hopefully, you won’t get to that point!
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Since my crisis in 2018 no issues driving
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Although not being able to drive results in a significant lack of mobilitiy (especially when you live in the countryside) I have chosen a very careful approach to regain this form of independence.
As MG features have been shifting from ocular issues to generalized MG with major muscle problems I had to focus on body flexibility, endurance and responsivness.
These abilitlies have been tested intensively and finally successfully in the course of two necessary rehab stays. Subsequent to a final OK from ophthalmologist I would carefully start to test my driving.
After all it took me more than a year to drive again. It turned out to be worthwhile to take this time to ensure that I am able to focus and concentrate in the driver´s seat.
Today I drive regularly. The longer the ride the more important is to care for an adequate medication level. I would still stay away from my car, though, in the maybe 5% of days where I just feel disabled and would limit long rides to the necessary level.
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It’s been a 17 + years living with MG and I’m to the point of coping daily to the challenges. It started as ocular with the right eye being affected first. I ended up on pyridostigmine and steroids for quite some time which were increased dosages until their side effects became too much to handle. The neuro eye doctor who had diagnosed that was treating me referred me to a neurologist who after reviewing my test, symptoms and issues put me on azathioprine 50 mg twice a day and IVIg infused monthly. This worked for awhile but after about 10 years was not getting the job done. Unfortunately, he left the clinic I was using (260miles round trip) and I had to change doctors again. The new doctor suggested changing to Vyvgart on a infusion 4 weeks on then 4 weeks off. This helped out immensely but, due to scheduling issues I was not able to see him as planned for 10 months. I changed again to another Doctor who handled multiple cases of G MG and she suggested using the Pyridostigmine on the days towards the end of the 4 weeks off time which has reduced the symptoms until the next infusion. I did use an eye patch with the loss of depth perception and after going on the IVIg have not had any issues with double vision. Since using the Vyvgart for 9 months still no double vision but do exhibit ptosis in the right eye as well as neck drooping and swallowing issues. I an currently taking 30MG of the pyridostigmine when the symptoms return and have upped it to 60 mg since. This has helped a lot. The symptoms are such that I no longer feel apprehensive driving. The biggest issue is the fatigue in the hot weather. I found that if you keep the air conditioning in your car pretty cold it also helps as well as eye drops whenever the eyes feel dry. so far it has worked excellent for me.
During my struggles with the MG I have also been diagnosed with RA, another autoimmune disease. The azathioprine and Humira has been helpful keeping it under control with very few flairs of joint pain hitting me. When it does happen, I take a small dose of Prednisone for 3 days to combat the hand and knee pain. In the last 12 months I’ve only had to do that once.
My main takeaway is to listen to your body. If you are fatigued, take a short rest. Be certain you get 8 hours of rest every night. Listen to your doctors and do what they say and if you have a change in your condition, let them know. Don’t let yourself become discouraged, the creator of all of us always opens another door when one door closes. Have the courage to go thru the new door and overcome your fears. I have been driving for the last 14 years using the different methods for the double vision (eye patch, eye tape and eye drops). Listen to your body, if fatigued stop and have a cool drink. if you have trouble swallowing, take smaller bites and chew well, don’t panic take a sip of cold water. Life is too short to miss out on it by putting yourself in seclusion. There are more drugs in the pipeline, discuss with your doctor and if you feel your doctor is not listening to you, fire them. Good luck and God Bless you and yours.
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