AF Association
13,199 members16,081 posts

Ptosis and double vision

Replying to CDDreamer I too have drooping eyelids and have had a MRI scan And a CT scan and blood tests that even one of the them my Doctor had not heard of. It was looking for anti-AChR antibodies and a MUsk test. I was wondering how far along the test program she is now. As today I have had electrical test in my forehead and just beside my eye. The Doctor kindly told me it was not Myasthenia so what have I got. Also what have you got. Very interested Tricia

3 Replies
oldestnewest

Ptosis (drooping eyelids) and diplopia (double vision) are often a sign of Mitochondrial Disease (Mito). It's often misdiagnosed as Myasthenia Gravis. You would need to see a neurologist and/or metabolic consultant for investigation. Most mainstream doctors are unaware of the condition.

2 likes
Reply

Hello,

I am diagnosed with Orbital Myositis two weeks ago at the Bristol Eye Hospital. I am suffering from double vision.

I also had ptosis a month ago, the doctors were suspicious of Myasthenia however my test result was neutral. (Initially, when I first went to A&E, I was diagnosed with scleritis and after a week I was diagnosed with Thyroid Eye Disease (TED) at the same hospital.)

Still sticking to the diagnose of TED only, doctors increased the dose of the steroids. I received 1g intervene injection of steroid, two days in a row. It stopped the eye lids dropping but my diplopia didn't improve. I was left with 50 mg of steroids. Reducing the dose biweekly, now I am on 30mg.

When I dropped the dose to 40 mg, on the first week my right eye lid dropped half way for 2-3 days again but it improved itself without the need of increasing the dose of steroid.

Last week I started to take immunosuppressant tablets which will take the treatment over from steroid tablets in 2 months.

I am hoping to be able to prescribed some prism glasses as soon as possible so I don't have to wear an eye patch even though looking like a pirate is a cool thing (some say), it's not much fun for me. Compared to last month, I am a lot lot better except missing cycling and having a normal vision :)

Please do reply to my message if you also have double vision problem.

Best wishes

Reply

I don't think you are looking in the right place here as we all have dodgy heart rhythms but I googled ptosis support group and there seemed to be plenty to look at.

There's a Thyroid UK group on HealthUnlocked. Just put ptosis in the Search AF Association box above and then the results are divided by community, Thyroid UK included.

Reply

You may also like...