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.
@wcburns2 Welcome to Mayo Clinic Connect! I’m glad you found this site where you can ask and answer questions and receive support and encouragement. You said that Mayo Clinic keeps coming up; are your doctors mentioning it? Connect has a special link to admissions if you would like to try it. The link is https://mayocl.in/1mtmR63.
You might also like the discussion about going to Mayo Clinic: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/ This will help answer all your questions that you didn’t know you had!
I hope you’ll stay with Mayo Connect and let us know if/when you have surgery.
How did you find Connect?
@wcburns2 Welcome to Mayo Clinic Connect! I’m glad you found this site where you can ask and answer questions and receive support and encouragement. You said that Mayo Clinic keeps coming up; are your doctors mentioning it? Connect has a special link to admissions if you would like to try it. The link is https://mayocl.in/1mtmR63.
You might also like the discussion about going to Mayo Clinic: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/ This will help answer all your questions that you didn’t know you had!
I hope you’ll stay with Mayo Connect and let us know if/when you have surgery.
How did you find Connect?
Thanks Becky. My wife and friends and that fact my affliction is rare. Started looking into Mayo and just signed up. Don’t realize it was more of a forum discussion but like what I have experienced so far. I will learn more and that is always good. I have taken steps to make an appointment and getting my medical records faxed over. I will let connect know more as I go along. In the 5 years I have learned a lot about gMG and oMG. And I’m not done yet.
Thanks again for the welcome aboard.
Bill
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?
Just sharing fir now. Have started appointing request. Mayo contacted me for previous history and has not asked for anything more yet. I understand they research all my history before actually interacting with a doctor
I developed ocular myasthenia gravis in April 2021. Just awoke and had my left eyelid be halfway open. Happened to get a call regarding an appointment with my ophthalmologist and mentioned what was going on they had me come right in and she sent me for the blood test that confirmed that I had the blocker substance in my blood and OMG was diagnosed. Luckily I got right in with a zoom call to a neurologist. (My daughter-in-law knew one in Chicago) and she put me on 10 mg of prednisone and prescribed Mestinon that I could take up to three times a day as needed The eye drooping went away, and that summer I was able to go down to 2.5 prednisone and only used Mestinon once a day.
I had knee replacement surgery and still remained stable. Then I saw a neurologist at Henry Ford Hospital in Detroit who sent me to a surgeon, suggesting a thymectomy even though the CT of my thymus did not show any obvious issue. I was told it could you reduce my chance of going into full-blown Myasthenia gravis
I had increased symptoms and upped my dosage of prednisone for a while, but then it went away, and I was able to go down to 5 mg of prednisone, and only one Mestinon a day. Had my other knee done in the fall of 2023 and no immediate issue, but in the busy holiday season, my double vision got worse along with some breathing issue and I gradually went up to 20 mg of prednisone. I currently take three or four Mestinon per day, depending on what I'm doing. Even with all that medication, I do not feel normal like I did initially when I went on these two medicines. Now my Neurologist is having my blood tested for an enzyme, which will let them know which of the next level oral medication's I can take, but she warned me once I get on them it could take six months before they replace the prednisone. I do find stress and lack of sleep, seem to make it worse and of course I'm stressed and not sleeping well worrying about it. Oh well
Has anybody been prescribed Imuran when the prednisone Mestinon combo for MG doesn't seem to be working? My insurance has been very slow authorizing this and my doctor says it can take six months before the affect of the new medication actually helps.
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@wcburns2 Welcome to Mayo Clinic Connect! I’m glad you found this site where you can ask and answer questions and receive support and encouragement. You said that Mayo Clinic keeps coming up; are your doctors mentioning it? Connect has a special link to admissions if you would like to try it. The link is https://mayocl.in/1mtmR63.
You might also like the discussion about going to Mayo Clinic:
https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/ This will help answer all your questions that you didn’t know you had!
I hope you’ll stay with Mayo Connect and let us know if/when you have surgery.
How did you find Connect?
-
Like -
Helpful -
Hug
1 ReactionThanks Becky. My wife and friends and that fact my affliction is rare. Started looking into Mayo and just signed up. Don’t realize it was more of a forum discussion but like what I have experienced so far. I will learn more and that is always good. I have taken steps to make an appointment and getting my medical records faxed over. I will let connect know more as I go along. In the 5 years I have learned a lot about gMG and oMG. And I’m not done yet.
Thanks again for the welcome aboard.
Bill
-
Like -
Helpful -
Hug
1 ReactionJust sharing fir now. Have started appointing request. Mayo contacted me for previous history and has not asked for anything more yet. I understand they research all my history before actually interacting with a doctor
-
Like -
Helpful -
Hug
1 ReactionI developed ocular myasthenia gravis in April 2021. Just awoke and had my left eyelid be halfway open. Happened to get a call regarding an appointment with my ophthalmologist and mentioned what was going on they had me come right in and she sent me for the blood test that confirmed that I had the blocker substance in my blood and OMG was diagnosed. Luckily I got right in with a zoom call to a neurologist. (My daughter-in-law knew one in Chicago) and she put me on 10 mg of prednisone and prescribed Mestinon that I could take up to three times a day as needed The eye drooping went away, and that summer I was able to go down to 2.5 prednisone and only used Mestinon once a day.
I had knee replacement surgery and still remained stable. Then I saw a neurologist at Henry Ford Hospital in Detroit who sent me to a surgeon, suggesting a thymectomy even though the CT of my thymus did not show any obvious issue. I was told it could you reduce my chance of going into full-blown Myasthenia gravis
I had increased symptoms and upped my dosage of prednisone for a while, but then it went away, and I was able to go down to 5 mg of prednisone, and only one Mestinon a day. Had my other knee done in the fall of 2023 and no immediate issue, but in the busy holiday season, my double vision got worse along with some breathing issue and I gradually went up to 20 mg of prednisone. I currently take three or four Mestinon per day, depending on what I'm doing. Even with all that medication, I do not feel normal like I did initially when I went on these two medicines. Now my Neurologist is having my blood tested for an enzyme, which will let them know which of the next level oral medication's I can take, but she warned me once I get on them it could take six months before they replace the prednisone. I do find stress and lack of sleep, seem to make it worse and of course I'm stressed and not sleeping well worrying about it. Oh well
Has anybody been prescribed Imuran when the prednisone Mestinon combo for MG doesn't seem to be working? My insurance has been very slow authorizing this and my doctor says it can take six months before the affect of the new medication actually helps.