Hi, Welcome to the group. Hope your diagnosis is not MG!
Double vision is a real bother. I tried a Fresnel stick on lens too, but my double vision changed during the day and with my Mestinon pills, so most of the time the lens didn't really help, and until my treatment worked, I ended up using one eye and patching (and later shutting) the other eye. It seemed that with one eye it was about 1/3 as good as two eyes.
My first MG symptom was double vision. Then a drooping eyelid. I went to the eye specialist and he put an icepack on my eyes for a couple of minutes and when my eyelid no longer drooped, said that it was 85% likely I had MG. My own MG soon moved from just eyes to whole head and talking, chewing, etc, became difficult.
MG symptoms are from muscles that tire quickly. So I could chew a little, then had to rest. Within a month I had general MG where all of my muscles seemed to wear out quickly. I could type a line on the computer and then my fingers had to rest to do another one. Breathing, walking etc. all were the same.
I didn't fall, but did trip a few times from the vision problem, especially when I was using one eye.

Hope you find out what is wrong. If it is MG, you will find that it is treatable and with treatment you can lead a good and long life. However, most of us have a slow diagnosis, get worse before we get treatment going and our first year is quite bothersome as have to figure out what treatment works best for us. Each of us seems to be different, and so each of us, working closely with an experienced neurologist has to work out what works for us.
Good Luck
Russ

Thanks, Russ. I’m hoping it’s not MG too. If I do the 60 second lateral gaze test, my double vision increases drastically. That’s what makes me think it’s ocular MG because I can increase double vision by fatiguing affected muscle (lateral recurs eye muscle). I’m hoping that if it is ocular MG, that it hasn’t generalized. I’m not having any of the swallowing or talking issues but starting to wonder about upper arm muscles. It’s hard to wait for neuro appt. Guess I was trying to encourage myself that my falls could just be from vision problem and not necessarily generalized MG. Both my falls have been at the tail end of strenuous hikes. First fall not so terrible- just ended up with swollen knee that made me limp for a few days. Second fall a little worse: needed some stitches in my knee and several other more minor cuts.

Hi Northwoods. I have diplopia as well as generalized MG that had gone untreated for over 25 years, and yes, I have fallen. I do trip as well as walk into things, but the most concerning of the falls have been when my legs seem to have disappeared beneath me. This has only happened when I have pushed myself way too much (strenuous hikes, anyone? ;-)), or when we are going through a hot and humid stretch of weather. Although prisms in my eyeglass lenses (not stick-on Fresnel) helped for a long time, after about 15 years my diplopia became so unstable that I just wear an eyepatch these days.
Because of the falls, I have learned to try to keep my right hand free when going down steps. Railings and bannisters are nearly always on the right.

If you do have MG, things look fairly promising for you as long as you receive early enough treatment. If you are seronegative but still have MG symptoms, persist until you have the appropriate neurological tests, particularly EMG and the single fiber EMG. Of course your neuro might want to rule out other neurological diseases -- over the years I had several brain MRIs because my MG symptoms look a lot like MS. I would have received treatment years ago if anyone had thought to do the SFEMG test on me.

Thanks, Nanosecond!

I just noticed on my previous post, auto correct messed up name of the eye muscle. Should have said “lateral rectus”.

So is SFEMG a pretty definitive test? (I’m scheduled to have that same day as neurologist appt.)

“...most concerning of the falls have been when my legs seem to have disappeared beneath me” - - Wow, I feel like that is a really good description of what happened to me. I didn’t have any warning whatsoever. I didn’t even get my hands out in front of me to catch myself before I landed! Instead of having scrapes/wounds on the palms of my hands, I cut the back of my left hand. Small scrape to face. Knee laceration that needed a couple stitches.

I’m struggling today, crying some. Neuro opthalmologist says stop hiking until I’ve seen neurologist and know what’s going on. Almost ashamed to write this as it must seem like small potatoes to those on this list that have much greater limitations.
So grateful to you and Russ for taking time to reply to me.

Gotta ask: tell me your thoughts/story behind choosing “Nanosecond” for your screenname ?

My husband just picked me up from the floor. I fall frequently, at least once a day. I either loose my balance or my legs just collapse. I do have MG and have for 25 years. So sorry you are experiencing this. Best of luck!

Oh, Piamaria, I’m sorry you fall so often! Thank you for wishing me best of luck.

Hi Northwoods. If you are positive for MG on the single-fiber EMG, then you have a confirmed diagnosis of MG. SFEMG is a tricky test to perform so it is not obtainable everywhere. There are a few people on this site who don't have any positive test results but whose symptoms are clinically so suggestive of MG that they are being treated for MG on the basis of their response to Mestinon/pyridostigmine.

My given name is Nan. By nature I am quick and active (ergo "Nanosecond") which combined with the generalized MG has created some ridiculous, untenable situations. The universe definitely has a sense of humor.

When I read your post mentioning the strenuous hikes, it reminded me of myself. I am an enthusiastic walker. Our honeymoon was spent hiking in the Tetons. Nowadays, as I wait for the CellCept to take effect, I have had to learn to listen more and to slow down. Patience is not my forte, but I am trying. Mediation and gentle yoga - along with an antidepressant - helps me.

I think we probably all have been frightened by unexplained symptoms and have grieved when we first faced limitations. Give yourself some time. If you have MG, there is a good possibility that with proper treatment, you will have a productive life. And eventually, after you figure it out, please be sure to let me know how you manage the hikes! <3

PS. I meant meditation not mediation (autocorrect error).

Ha - because of the context, I read it as meditation even though it actually said mediation!
I love the explanation behind nanosecond -very creative and appropo! Your post made me smile, and I'm delighted to be connecting with someone that shares my love of the outdoors. The Tetons - wow! Bet you and your spouse have some awesome photos!!
My husband and I were planning on doing a thru-hike of the Northville-Lake Placid Trail this September with our two dogs. We'll have to see how things evolve; if this is MG, we may be better off shooting for the following year if it is still even a possibility since it sounds like it takes about a year to get meds figured out.
Piamaria mentioned her balance issues also contribute to her falls. Do you have balance issues? i can't figure out if my balance is off or if it is just my eyes that are affecting my balance. I do know that before I got the fresnel prism sticker that I was getting nauseous when I moved my head too quickly. That at least got better with the fresnel.
Thanks!

Hi Northwoods. Welcome. My first symptoms were double vision. I didn't realize I had double vision to start with. When I would walk outside in the yard in the late afternoon or early evening, the ground would look like it was shifting beneath my feet and I would stumble. When going down steps, the next step would look like it moved and if I didn't grab the rail I would have fallen. I would really have to concentrate, looking at the ground as I walked. It was very disconcerting.

I realized I was having double vision when the text on my computer screen would start to split into two copies with one set slowly drifting outwards.

Good luck with your appointment.

Northwoods my balance is generally fine. I do have dizzy days -- vertigo sometimes associated with the double vision and sometimes not. If I patch an eye and still am dizzy an hour or so later, 12.5 - 25 mgs diphenhydramine (generic Benadryl) often helps. If I am nauseous with the dizziness, meclizine is a better choice. Both diphenhydramine and meclizine can have deleterious effects on cognition, especially with long term usage, so I avoid taking them unless absolutely necessary.

Hi there I had fall spells when I had double vision and general MG. I fell twice this past winter and I wasn't on ice. It has gotten better as the double vision started to clear up with medication, however I still just fall from time to time for no reason the muscles in my legs just seem to go out. I walk with a cane, I need it to hold me up when my MG decides to let me down.

Thanks, Jaydtoo and Quen1966.

i do experienced falling down on my knees, whenever i take high mg of prednisone. its awful but oh well... take care every1/

I have unexpected falls as well.. it's like my muscles/tendon/ligaments no longer support my knees and ankles and they each slide/lock in different directions. I have found the use of a cane/walker to help, but also afos (foot/ankle splint) as I have foot drop in both feet. My falls are usually when I have pushed myself too hard and/or startled unexpectedly. The afos give me better balance and muscle control, allow me to walk without the cane/walker. My mestinon definitely helps to keep my.muscles more responsive, can tell when it's wearing off.