Myasthenia Gravis

I have had nuro problems for the last few years and my eye doctor thinks it could be Myasthenia Gravis. I have breathing swallowing issues, numbness in my arms to arms, migraines, double vision when tired, eye lid closes, GI issues and fatigue. My eye doctor did one test with the eye lid and it recovered after two minutes of ice (for awhile) and now order a blood test. Why would an eye doctor know more about Myasthenia Gravis than my other doctors, I been dealing with this down hill battle for years. Yes I have seen Neurologist and GI doctors too.

I developed ocular myasthenia gravis after I finished radiation for my breast cancer. My internist did a blood test to determine my diagnosis. I was active for about a year then remission. I was in remission for about a year and a half. My right eyelid is droopy again. Start medicine and it is manageable. I hope you find an answer soon.

Thank you; I hope you are doing well.

I am glad to have found this discussion. I am in the process of testing for MG which started with a droopy eyelid. I have other symptoms as well and have an appointment with a neurologist next month. It is calming to know that this can go into remission. Wish it wasn't so darn hard to get an appointment with a specialist.

I hope you can find your answers with your visit to the neurologist. I kept calling my neurologist’s office asking for an earlier appointment and got one.
Please let us know how you are progressing.

I received the results of the first round of blood tests and all were negative for MG. There is at least one additional and more sophisticated test for which results have not come in. I'm feeling more calm.

Also, two days ago I saw my retinal specialist who did a vitrectomy on the droopy eye. He very much doubts my issue is MG. He believes an eyelid muscle was stretched out during the surgery and that is why the eyelid droops. He was very encouraging and I broke down and cried with relief.

Ocular Myasthenia Gravis (OMG) right eye only. Myasthenia Gravis (MG) is rare. A lot they don’t know about it like why my right eye lid only. My journey Started with surgery for Ptosis (droopy lid) But results not completely successful. Only minor improvement. On follow up visit describing my symptoms I was tested for MG and tested positive.
{ Blood test results…
Blocking 48 range 0-26
Binding 2 should less than .4
Modulation 41, should be < 45}

Involved subsequent steps with neurologist, Ct scan for thymoma in my chest (negative) first known symptoms that i acknowledged was December 2020. Did have possible event in 2018? Have tried pyridostigmine and prednisone, no help that I could determine. Have had second surgery which did add additional lift to lid (more time above pupil and more often) but I still struggle. Trying Upneeq now on limited basis and feel it can and does add very small amount of lift. Have purchased 2nd box of 10 drops.
Considering a third surgery attempt to keep lid above pupil. In my quest for answers and the best solution, Mayo Clinic keeps coming up but I am not sure sure where to start, so I have submitted info for appoint. This is my first post and my first attempt at contact. Any advice will be greatly appreciated. Also was diagnosed with another rare issue, Ocular Cicatricial Pemphigoid. Still seeing cornea specialist and taking 2000 mg Mycophenolate daily. I hear we have it under control as best as possible.

I hope this info helps others and the Mayo Clinic can guide this now 70 yr old to a path and a plan for improvement.

My ocular MG was in remission till January of 2024. I had my breast reconstruction in June 2023. The stress and anesthesia may have brought it back.This time only my right eye lid drooping. I will go in June to my ocular plastic surgeon. I had both upper and lower lids repaired in September 22. I will have another lift. It does not affect my vision. I went and had an eye exam when the MG came back. Even though mine is ocular I do still get tired.

That is good news your vision hasn’t been affected. Have you been treated by anyone at the Mayo Clinic or just sharing info with others like me on this connect platform?

I live in Georgia. My doctors are at Emory.