Ocular problem

[Shadow35]

Hi. Almost two year ago i start having a small ptosis that later bring pain around the eye, eyebrow tgat transform in drooling face for few minute and lost of control of one eyelid. I saw a neurologist but because i did'nt film it, find nothing. Every test is borderline normal/anormal. I had difficulty to walk in alternance of restless leg days and night. I now take pramipexole twice a day and the stiffness and walking improve. I stop having big problem with my eye. Just a ptosis that is worst certain day until last week. I start having pain again and my eyebrow frooze for maybe 25 min in a position. An other day someone saw me eyelid drop. It just last few minutes but i wonder. I every test i had is borderline normal can it still be myasthenia? How long to be diagnosed? Each time i'm seeing a doctor everything is fine.

[Blueoxo]

Hi I just came across your post. I have had similar issues, I tested positive for the antibodies but described as a weak positive. I get very stiff and suffer with fatigue. I’ve had short episodes where my tongue seems to stop working properly, usually after long conversation and I start to slur, this passes relatively quickly. The skin above my eye droops down resting heavy on my eye lid at one side, some days worse than others. I also have occasions where food goes down the wrong way. Visits to the neurologist are usually in the morning when I am at my best and all other tests came back normal. Neurologist now thinks I am a false positive and has re sent off my blood test again but keeping me on mestinon with a view to review in 12 months. I am as confused as you are. .I don’t now know if I have myasthenia or not. There is a myasthenia gravis Facebook page, run by the myasthenia Gravis association, you tend to get a lot more discussion and replies on the group. It is a closed group so not everyone can see your posts, only members. I hope this is helpful

[Shadow35 in reply to Blueoxo]

Hi. Is good to know that i'm not alone but they still don't know what i have. I now have problem with a finger that don't bend properly and a my hand is a little bit swollen almost all day long. I just wake up a morning like that. The other day, a doctor told me it can take 10 years to find what i got.

[Blueoxo in reply to Shadow35]

I hope they get to bottom of what’s causing all of your symptoms, frustrating as it is in the meantime . Take care of yourself x

[stiff19]

you are not alone I have shown symptoms for five years with slow progression of intermittent weakness and am a mystery 🤷‍♀️my eye was the worst still is but weakness following and so frustrating to not have answers but hope we all do get them . best wishes 🤗