Just wondering if anyone has had any experience of a droopy eye? Mine seems to come and go but has been getting a lot worse recently. I also think it tends to get worse throughout the day as I get more tired. I have a CT scan this week and have been referred to a neurologist who I’m seeing in a couple of weeks. My GP did mention myasthenia gravis which is obviously a possibility but surely it’s just another one of lupus’ tricks?! I really hope so because I can’t be bothered with the whole process of getting another diagnosis if I’m honest!!!
Thanks x
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Hiya, that’s really reassuring thank you. Did you ever get to the bottom of the science of it? Like was it just inflammation of nerves? Yes still working on that haha!! X
Peripheral nerve damage due to SLE (or perhaps a longstanding B12 deficiency) is thought to be mucking around with various bits of me. My left side tends to go walkabout when I eat too much - including the left eye and mouth. Go numb and droopy on that side of the face as well. Feels like I've had a mild stroke.
Radical way to loose weight.
Current theory - all to do with autonomic nerves around the gut ????
Like Clare said - I think some myasthenic features do overlap - its a matter of keeping the illness well controlled and Doctor bothering until you get an answer.
Seeing a neuro specialist in a few days for more information. Hoping he wont think I'm insane. Thankfully there's plenty of back up about whats happening from other specialists.
I'm at the one year mark of trying to get a diagnosis for this one.
Oh gosh, that all sounds awful!!! Really hope the neurologist is able to give you some answers. I’ve been diagnosed for less than a year and I just don’t feel like my lupus is under control at all. Because I’m only 21 and have a whole life of meds ahead of me, my rheumatologist doesn’t want to give me any of the damaging drugs unless it’s life or death!! But when I was on prednisolone for a bit I felt like a different person, it was amazing! Such a catch 22 situation. Really hope you get some answers soon x
I've had the illness since the age of 9. Now I'm 49 - (and I very stupidly stuck with an extremely dud specialist who under treated me for too many years when a lot of this damage probably occurred)
Now I always make a habit of asking every different specialist I see - from whatever background - their opinion on the Lupus.
But keeping the illness controlled has always been a priority for me as my version of SLE is on the super duper freaky and aggressive side. I've never really been off pred for very long since the age of 14.
Its a really difficult balancing act. I can see your rheumatologists reasoning.
With my new neuro stuff - I've been itching to increase my meds but when I asked my GP what my white blood cells where doing he said my Lymphocytes are a little too low to muck about them.
Catch 22.
I believe ? with neuro stuff - you can end up with a sort of minor fall out effect from an earlier flare ????? don't quote me on this. Its possible I dream-pt this up. Fatigue definitely makes neuro stuff worse too.
It never hurts to get a second opinion when it comes to managing Lupus. A top notch Lupus specialist might be worth seeing just for fun - just to make sure you're on the right path.
Its important you follow your instincts. You know whats going on with your body better than any Doctor will.
Yes. Horrid and made driving very tricky. I took loads of selfies but didn’t satisfy criteria for clinically evident fatigabke weakness. My sfemg was so ‘off’ that it was attributed to ‘artefact’ and my antibodies were normal. Never did he anti musk ones. Still get it periodically when flaring or about to. I don’t have MG as such but there is documentation of myasthenic features ioverlapping with SLE. I’ll see if I can find it. Mine improved on Mycophenolate but is niggling once again after a few weeks off it.
I’ve got so many pictures too!! Did your sfemg hurt? What does it mean when it’s attributed to artefact?? It makes sense that there would be an overlap since Lupus is systemic I guess. Thanks for your help x
I wasn’t expecting an sfemg, just an emg so thankfully wasn’t anticipating the needles into my eye sockets!!! It didn’t really hurt - the needles are very fine. Artefact seems to mean ‘operator error’ - the test is very difficult and erratic results are deemed worthless. Also, the machine crashed halfway through which wasn’t helpful!
I view the various odd symptoms as part of my particular SLE:UCTD package and I’m glad not to have MG - it’s a hard one to work with. I too have had very severe headaches at times with the ptosis so there may well be a link but I have to tilt my head up to see properly so perhaps it’s caused by the bad neck position????
I have had periods of this too with my right eye. For me it seems to have been connected to occipital neuralgia so yes, nerve related. My rheumatologist has twice put in nerve blocks into the occipital nerve on the right hand side for me which so far seems to have done the trick.
Mine is my right eye too. I didn’t realise occipital neuralgia could cause a droopy eye! I did have a really bad headache that wouldn’t budge for 15 days but it disappeared after I started a course of prednisolone. X
Hi I have this and it is usually worse when I am tired or stressed or looking upwards for more than a few seconds.
My Eye specialist ordered blood tests for MG as there is a known link with lupus, one autoimmune condition leading to another. I also saw a neurologist and thankfully all the tests were clear.
I was then referred to orthoptics which deals more with the "mechanics" of the eye like squints. I was diagnosed with acute blephorospasm, (twitches) leading to the drooping eyelid (ptosis).
I have been told I can have Botox injections if it does get worse, but the biggest problem is when I am doing eye tests and field of vision tests, ironically! Since I don't do that every day , I consider it more of a nuisance than a problem.
That all sounds reassuring. I’m the same in the sense that it’s more just a nuisance!! As long as nothings causing any long term damage I’m not overly bothered. Xx
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, I consider it more of a nuisance than a problem.
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