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

[Rowlydee]

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.

[BurcuBristol]

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

[Rellim296 in reply to BurcuBristol]

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.