Eyes Drooping. Help!!!

[herpesbaby]

Ever since getting sick, since April 19th, I've developed this eyes drooping that comes and goes. Is this common? Please help.

 

[Valentijn]

Ever since getting sick, since April 19th, I've developed this eyes drooping that comes and goes. Is this common? Please help.

It's a symptom of myasthenia gravis and maybe some other diseases. In the case of myasthenia gravis it generally gets worse later in the day. But you need to get it investigated by a doctor.

 

[herpesbaby]

Thank you for response @Valentijn
So it's not typical of cfs me to have drooping eyelids

 

[Old Bones]

So it's not typical of cfs me to have drooping eyelids

@herpesbaby Drooping eyelids are certainly typical for me, and maybe also for ME, if the number of past threads on/including this issue are an indication. Here are a few links.

http://forums.phoenixrising.me/index.php?threads/ptosis-drooping-brow.10886/

http://forums.phoenixrising.me/inde...ds-corresponding-with-pem-like-symptoms.8580/

http://forums.phoenixrising.me/index.php?threads/epicanthal-eye-fold.3993/

http://forums.phoenixrising.me/inde...nd-me-cfs-a-cause-of-central-sensitivity.426/
(article mentions "the eyelids may droop")

http://forums.phoenixrising.me/index.php?threads/very-severe-me.40281/ (at least one post mentions droopy eyelids)

 

[IThinkImTurningJapanese]

Drooping eyelids are certainly typical for me, and maybe also for ME, if the number of past threads on/including this issue are an indication.

That and the damn allergic shiners.

 

[herpesbaby]

Additionally, for anyone interested:

http://www.aaopt.org/horners-syndrome-masked-herpes-simplex-keratitis

https://www.researchgate.net/public...complete_ptosis_in_herpes_zoster_ophthalmicus

 

[Kati]

Thank you for response @Valentijn
So it's not typical of cfs me to have drooping eyelids

No it's not, and new symptoms, especially those worrisome to you, should always be reported to a doctor, preferably one who knows your medical history.

 

[herpesbaby]

No it's not.

That's what I though. Otherwise it would be one of the official symptoms, wouldn't it?
And the fact that some people with cfsme have it is just an example of theory of probability. Since there are many people with cfsme they will be some amongst them with drooping eyelids, just like amongst population withouth cfsme.

 

[Snow Leopard]

Thank you for response @Valentijn
So it's not typical of cfs me to have drooping eyelids

Some people do have some drooping, but for me it's the upper eye lids and brow, rather than the lower eye lid and not to the severity of say, Myasthenia Gravis. My upper lids have sagged slightly asymmetrically to the point that I have an 'epicanthal fold' on one side, but not the other. When I see a doctor (and also complain about my constant eye pain), they simply dismiss it, because they're clueless...

If it looks like this, you definitely need to see a doctor:
https://upload.wikimedia.org/wikipe...ngenitalptosis.JPG/220px-Congenitalptosis.JPG
https://en.wikipedia.org/wiki/Myasthenia_gravis

 

[Mrs Sowester]

Mine droop, rarely at the same time!

 

[Valentijn]

And the fact that some people with cfsme have it is just an example of theory of probability. Since there are many people with cfsme they will be some amongst them with drooping eyelids, just like amongst population withouth cfsme.

Misdiagnosis is also a big problem, due to sloppy diagnostic criteria. That's been improving lately, which should help. But a doctor's premature assumption that they've hit on ME/CFS as the correct diagnosis can inappropriately end investigation into other potential causes of symptoms.

 

[IThinkImTurningJapanese]

That's what I though. Otherwise it would be one of the official symptoms, wouldn't it?

Not necessarily, ME/CFS is a neurological disorder and will involve problems outside of the criteria for diagnosis.
@Valentijn is strongly making the point that Doctors need to ensure that something else isn't the cause.

 

[me/cfs 27931]

I've had eyelid droop for the past ~15 years (relapse/remitting ME/CFS for 39 years).

Two possible causes of eyelid droop I'm pursuing are Myasthenia Gravis (as mentioned above by others) and Narcolepsy.

So far, my Myasthenia Gravis tests are inconclusive. I have measurable muscle weakness from a nerve conduction test, so have a diagnosis of Myasthenia for now. I did not benefit from Mestinon.

Narcolepsy testing is in 3 weeks.

But like others say, maybe eyelid droop is just another symptom of ME/CFS.

 

[me/cfs 27931]

@herpesbaby Do your eyes go beyond droop and completely close when you walk or engage in a physical or mental task?

I sometimes bump into things when I walk, because my eyes have closed. It takes tremendous effort to keep them open.

 

[herpesbaby]

No they don't. @Webdog Sorry you go through that

 

[me/cfs 27931]

No they don't. @Webdog Sorry you go through that

I'm an odd duck, that's for sure!

 

[Lindberg]

I'm an odd duck, that's for sure!

@Webdog, then there's two of us! My eyes completely close as well and it can happen on a number of different situations. I need to let them rest before I can open them again, to force them is quite impossible.

I'm wondering if it might be that I have both MG (or LEMS) and ME, I have recently done some bloodtests and am waiting for the results. If it's not MG I hope they will test for LEMS as well since something isn't right and it doesn't really fit the ME-picture. I feel just like you, like an odd duck...

You mentioned that mestinon doesn't help you, have your doctor talked about trying prednisolon instead? If one has ocular MG then prednisolon might be a better choice from what I've read. Or if it's LEMS instead there are other medications that can work better as well.

I have never considered narcolepsy for myself since I don't fall a sleep. The problem is clearly neuromuscular since it can happen just by working out my legs. I guess the eyelids fall down for you as well if you try to gaze upwards for a short while? I recently discovered that I can't count out loud from 1-50, I begin to stutter and slur and it feels really weird not being able to do such an easy task. I hope to get some answers soon...

 

[me/cfs 27931]

@Webdog, then there's two of us! My eyes completely close as well and it can happen on a number of different situations. I need to let them rest before I can open them again, to force them is quite impossible.

@Lindberg I can force my eyes open, with effort. This sounds more severe than what I experience.

I'm wondering if it might be that I have both MG (or LEMS) and ME, I have recently done some bloodtests and am waiting for the results. If it's not MG I hope they will test for LEMS as well since something isn't right and it doesn't really fit the ME-picture. I feel just like you, like an odd duck...

Quack quack? My calcium channel testing came back normal.

You mentioned that mestinon doesn't help you, have your doctor talked about trying prednisolon instead? If one has ocular MG then prednisolon might be a better choice from what I've read. Or if it's LEMS instead there are other medications that can work better as well.

I will revisit the possibility of MG with my neurologist after the narcolepsy testing is done. I'll be sure to ask about prednisolon, thanks for the tip.

I have never considered narcolepsy for myself since I don't fall a sleep. The problem is clearly neuromuscular since it can happen just by working out my legs.

While I don't generally fall asleep, some of my episodes resemble cataplexy. I think for me it's prudent to get the narcolepsy testing done.

I guess the eyelids fall down for you as well if you try to gaze upwards for a short while?

No. It's strictly an exertion thing. As when walking or gardening.

I recently discovered that I can't count out loud from 1-50, I begin to stutter and slur and it feels really weird not being able to do such an easy task. I hope to get some answers soon...

While I do experience similar but milder slurring and stuttering, I can almost always hide it by enunciating words more slowly and carefully. Your description again is more severe than I experience. I sincerely hope you find your answers.