[Elle114]

I didn't take my Mestinon today, and after 4 hrs of computer work my MG eye is aching. It's not unbearable or anything but I keep thinking of how my neurologist says MG doesn't have pain, just weakness.

Just wondering if anyone that has a droopy eyelid, if they ever have pain in/around the eye?

[juliejayne]

I don't have droopy eyelid, but I have had pain, worse than aching around the eye. Initially over the eyes, then after getting new glasses that were supposed to fix my DV (they didn't) I now get ache, sometimes painful, beneath and to the outside of the eye.

But then I don't have a diagnosis yet either.

[ElenaG]

No never heard of this. I never got pain after my eyelids got droopy. But everyones different. Are you trying to forcefully keep them open. Computer can be hard on the eyes anyway.

[AnnieB3]

Elle, Your neurologist is wrong. MG causes weakness, however, it also causes the secondary symptom of pain.

Anyone who has ever been an athlete of any kind, even dancing, knows that overuse of muscles can cause cramping, spasms, and pain. Duh.

With MG, that just happens sooner.

And eyestrain can cause pain in anyone, but it might happen sooner in MG, too.

The weaker the muscle, the sooner you have pain.

I suppose your neuro thinks that MS only causes pain, and not weakness?

Don't assume that pain is MG, because other things can cause pain, too.

JJ, Have your eyes been checked for neuritis?

Annie

[mrsD]

I have to respond here too... this aching pain can come from sinus infections.

Also if your homocysteine is high, this can inflame the tiny blood vessels in the retina, and cause ischemia. This is more common than people realize. When combined with high blood pressure or stress that raises blood pressure sporatically, you can even get a blood clot in the retina....I had that over 10 yrs ago, and it does hurt..a vague aching pain.

Homocysteine is lowered by B12, B6, and folate. So if you have the MTHFR mutation, you might have elevated homocysteine due to being unable to activate B12 and folic acid to their active methyl forms.

You can search NT here for "MTHFR" and find many threads on this subject at our PN board, PD board, MS board and here too.
10% to 30% of people are thought to have this and need to supplement the active forms of B12 and folate(methylcobalamin and methylfolate).. which are both over the counter.

This will lower homocysteine and therefore protect your blood vessels.

An opthalmologist can see this damage in an exam with lenses, and if something shows up there, a further angiogram will show details.

[juliejayne]

I have not had any specific tests for neuritis. But I have the feeling that my ophthalmologist has given up on me. After my next Neuro appt (2nd opinion) I shall be asking for a 2nd opinion from the ophthalmologist as my DV is still there and if it is not MG then it must be something else. Question is what?

[cait24]

I have pain in my eye due to eye strain from the computer. It was terrible when the MG started. They diagnosed optic neuritis and put me on indomethocin. It eventually returned. Once I got prism, the pain in the eye was greatly reduced. I still get it but it is not as bad. I love my prism glasses and I would not be able to continue working without them.

You cannot expect a total cure with them. They give me a large center circle of clear (not double) vision, Outside that center ring things are still doubled. I need to look directly at the TV, computer etc or I see double and get eye strain and pain. Like is all about accommodation and accepting a lower level of normal with MG

On really good days the prisms may be too strong, on very bad days they are not enough. Overall, they benefit me tremendously.

kathie

[Needananswer]

I have terrible pain w droopy lid. For me it is the forehead muscles that KILL. It's like a sinus headache x10000. Bc my eye muscles can't get the job done my forehead tries to pick up the slack. It's super obvious bc one eye brow is kicked up.

I'm sorry ur in pain

[rach73]

http://http://www.myastheniagravisbl...d-be.html#more

I found this today as its from a blog I follow it details a study about headaches in MG. Maybe you should print it off and shove it under the nose of your neurologist - who clearly isn't keeping up to date with new studies on MG.

Rach

[rach73]

http://http://www.hindawi.com/journals/ad/2011/840364/

This is a link to the full study. Hope this helps

Rach