Double Vision and Autoimmune Diseases like MG: Can anyone relate?

I have had MG for about 10 years--I'm seronegative, my left eyelid droops, I have double vision and I have some overall weakness, especially in my hips and legs. My neurologist never went the prednisone route but instead started me on Mestinon (pyridostigmine bromide). Between taking Mestinon and using glasses with prism, my symptoms are decently controlled. I work full time doing computer work, and I can go for walks usually for about a mine before I notice the weakness in my legs. Has your doctor tried you on Mestinon? The side effects (at least for me) are much more manageable than those for prednisone. It only treats symptoms and does nothing for the underlying autoimmune disease, but it also doesn't compromise my immune system.

@ekelks I’m glad you're seeing your doctor this week and others in the following weeks! Have you made a list of questions to ask the doctor? Include all your symptoms, when they occur, and what you do to relieve them. This will give the doctor a good idea of what’s going on with you. Ask questions and write down all answers. All of this will make seeing a neurologist and opthamologist more productive.
Here is a link to a discussion on seeing new doctors. You may find it very useful.
https://connect.mayoclinic.org/comment/832931/
Has it always been your habit to stay up all night? Do you sleep all day?

@ekelks I’ve been thinking about you today and wondered if you’ve seen your doctor. Anything new or helpful for you? Let me know~

Becky, you're very kind. i did see my g.p. and he said to tell my ophthalmologist. She won't be able to see me until toward the end of April, she had to reschedule my appointment, but I will tell my neurologist Monday. My trigeminal neuralgia went away about, i dunno, 10 days ago, hard to remember, never lasted this long...and i can sleep better now, am not staying up too late either, when it was happening. Thank you, best. ❤️

I am being worked up currently to rule out MG and looking for SPS.

I do have double vision when I get tired. Sometime my vision gets wonky to where my vision is not good with my glasses.
My eyes crossed 3x in January. History of lazy eye. Anyway the right dr is on it.

As a matter of fact I’m tired now and looked up at the digita clock ,the double vision is back. The numbers are stacked on one set on top of the other.

Anyway, currently I’m taking baclofen for the bad spasms I get.

The thing that helps my vision a bit is resting. But how often is a person supposed to lay down. With me its often. If its not the spasms causing me to lay down its my tired self and vision trouble.

Do you see an eye specialist other than a regular eye dr? I’m wondering if I need to see another dr. Because the one i told about the eye crossing 3x told me to come in if it happens again. Dismissive. I don’t need that.

I’m sorry My post is more complaining than helping. A cool compress has helped fatigued eyes.

Best of luck to you. I hope you get help that works.

Nemo.

I was in Texas visiting my brother for two weeks. We were on his back porch at night and he told me to look up at the night sky. It was the night when we had a quarter moon and Venus was above it. About a week or so ago. I have never seen that. I looked up at it and I was wearing my glasses. I said how cool is that. I thought I was seeing something special. I looked at the quarter moon and it went straight down there were about 7 of them. Some of them had colors. I looked at Venus and it had colors. I asked my brother if he could see the colors and the extra moons and he said no. I thought he was kidding me. He teased and picked on me when I was little. That’s what brothers do. I started looking around at the houses with lights and they of course looked different. I took my glasses off and looked at it with one eye then the other. When I closed the left eye and saw the light with the right eye the light went straight down. When I looked with the left eye the light was different. Then the moon looked like someone swirled it with a paint brush. It was colored. I got an appt with an ophthalmologist the next day. He said I have beginning cataracts and that was probably the cause. Normally I am prepared for a Dr visit but not this time. The whole thing freaked me out. I only thought of questions after the visit of course. My brother /has street lights in his neighborhood and when I looked at -those the light went down somewhat. This is all new to me. If the quarter moon went straight down that isn’t double vision if I saw seven. I don’t know. Anybody experience this? I was diagnosed with Small nerve fiber idiopathic in may 2021. I am on that side of Mayo Clinic connect.

How did you lose the 35 pounds? Specific diet or ???

@51trudelator and all...Yes, my friend, thankfully I have lost that 35 pounds several times. I regain weight each time I'm taking steroids for Sarcoidosis or bronchitis or whatever. It simply follows the steroids for me and most. They cause my body to hold onto fluids so I balloon with the med. Then, after I'm off steroids, I slowly begin to feel better, take my prescribed diuretic and begin losing. I also go back to my normal eating habits. Steroids increase my appetite drastically. Common and terrifying side effects!

As you see, I have a love/hate relationship with these meds. They are wonderful and save lives.
But, we do need to be aware of the other effects often seen. They also can cause bone depletion so just be aware and weigh the costs. That's true of every medication or treatment we accept into our lives and bodies.

I wish you well and be blessed. Elizabeth

@51trudelatour, and all...I forgot to mention my new eye drops for dry eye and double vision. I
learned about these drops on a wonderful make-up tutorial for older women, with gray hair! They're called Rohto, dry eye lubricant. They are wonderful! I highly recommend trying them as I've found excellent relief from dry eyes AND far less problems with double vision. But, it returns if I get tired or stressed. I use the drops a few times daily, basically as needed. If I don't use them, my eyes are not happy and symptoms return.

I hope this helps someone. May even be a good tool for MG double vision sufferers, I don't know. I do know I'm thrilled.
Be blessed, elizabeth

Double vision can be a symptom of Graves Disease. Have you had your thyroid checked?