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.
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.
Haven’t been prescribed Imuran. But have tried Prednisone and and (pyridostigmine) mestinon but those didn’t work well for me.
Did have surgery to lift lid and this improved vision but lid still droops.
Also have Cicatricial Pemphigoid. Taking A generic for Cellcept (Mycophenolate) which is something I can stay on long term, while prednisone is not a long term option for this condition. This drug has not help my OMG right eye only. If you had success with prednisone may Cellcept could help too??
I had a CT scan to check for a thymoma, but that was negative. I did hear if you do have a thymoma there has been success against the generalized MG.
News for us both, the longer it stays ocular (2+yrs) there is an 85% chance it will not progress to the rest of our body.
I got appointments for tests and doctors at Mayo on July 29th for second opinion on all.
Haven’t been prescribed Imuran. But have tried Prednisone and and (pyridostigmine) mestinon but those didn’t work well for me.
Did have surgery to lift lid and this improved vision but lid still droops.
Also have Cicatricial Pemphigoid. Taking A generic for Cellcept (Mycophenolate) which is something I can stay on long term, while prednisone is not a long term option for this condition. This drug has not help my OMG right eye only. If you had success with prednisone may Cellcept could help too??
I had a CT scan to check for a thymoma, but that was negative. I did hear if you do have a thymoma there has been success against the generalized MG.
News for us both, the longer it stays ocular (2+yrs) there is an 85% chance it will not progress to the rest of our body.
I got appointments for tests and doctors at Mayo on July 29th for second opinion on all.
Yeah I'm not sure why she gave me a mirror on instead of CellCept. I've been on it for a few days now and nothing happening but she said it wouldn't change anything for a while still on the 20 mg of prednisone which helps but I'm not as good as I was last year, I think mine has gone generalized. I can swallow, but I think the lungs are affected. Yeah I'm not sure why she gave me Imran instead of CellCept. I've been on it for a few days now and nothing happening but she said it wouldn't change anything for a while still on the 20 mg of prednisone which helps but I'm not as good as I was last year, I think mine has gone generalized. I can swallow, but I think the lungs are affected. I had a good year one just a low-dose of prednisone, 2.5 and the Mestinon just once a day got me back to normal. But this spring my eye didn't droop, but i had double vision and some lung issues so had to up Prednisone to 20mg and mestinon 3-4 times a day. That helps, but I am still not normal if you know what I mean.
With the CellCept was it effective soon after you began taking it?
Although I showed no evidence on the CT of a thymoma they suggested the thymectomy so I had that January 2023 in hopes, it would keep it from generalizing.
Yeah I'm not sure why she gave me a mirror on instead of CellCept. I've been on it for a few days now and nothing happening but she said it wouldn't change anything for a while still on the 20 mg of prednisone which helps but I'm not as good as I was last year, I think mine has gone generalized. I can swallow, but I think the lungs are affected. Yeah I'm not sure why she gave me Imran instead of CellCept. I've been on it for a few days now and nothing happening but she said it wouldn't change anything for a while still on the 20 mg of prednisone which helps but I'm not as good as I was last year, I think mine has gone generalized. I can swallow, but I think the lungs are affected. I had a good year one just a low-dose of prednisone, 2.5 and the Mestinon just once a day got me back to normal. But this spring my eye didn't droop, but i had double vision and some lung issues so had to up Prednisone to 20mg and mestinon 3-4 times a day. That helps, but I am still not normal if you know what I mean.
With the CellCept was it effective soon after you began taking it?
Although I showed no evidence on the CT of a thymoma they suggested the thymectomy so I had that January 2023 in hopes, it would keep it from generalizing.
Cellcept was not effective in preventing eye droop or the “brain-nerve-muscle” communication caused by MG. It is being used to slow the Pemphigoid disease progression of my corneas. To have both is even more rare.
I had heard that Cellcept is a long term use (probably rest of my life) option because prednisone isn’t. although not the same drug may help fight the same battles. Since drugs that seemed to help you didn’t help me, I was curious if cellcept might help you too.
So far I am lucky, no double vision, no swallowing problems and other muscles do get the signals from brain. Sounds like yours may be moving to other parts of your body and that puts your condition at a whole new level. Keep fighting learning and listening. It’s all any of us can do. It’s hard to stay positive all the time especially when my issue is constant. So I try and remind myself to be thankful for the so many other positives things I do have.
My eye droop began Dec of 2020 and has stayed ocular only. I am going to engage another set of doctors at Mayo to continue my fight and kearn more. Have you been, or are you being, treated at the Mayo Clinic?
Cellcept was not effective in preventing eye droop or the “brain-nerve-muscle” communication caused by MG. It is being used to slow the Pemphigoid disease progression of my corneas. To have both is even more rare.
I had heard that Cellcept is a long term use (probably rest of my life) option because prednisone isn’t. although not the same drug may help fight the same battles. Since drugs that seemed to help you didn’t help me, I was curious if cellcept might help you too.
So far I am lucky, no double vision, no swallowing problems and other muscles do get the signals from brain. Sounds like yours may be moving to other parts of your body and that puts your condition at a whole new level. Keep fighting learning and listening. It’s all any of us can do. It’s hard to stay positive all the time especially when my issue is constant. So I try and remind myself to be thankful for the so many other positives things I do have.
My eye droop began Dec of 2020 and has stayed ocular only. I am going to engage another set of doctors at Mayo to continue my fight and kearn more. Have you been, or are you being, treated at the Mayo Clinic?
No, I am in the Detroit area so I am seeing Dr. Grover at Henry Ford who seems to have a good knowledge of the disease
I had initially seen virtually a doctor from Northwestern Hosp in Chicago where my daughter-in-law works in neurology. Then I tried a University of Michigan doctor, who just seemed a bit too unconcerned. Dr. Grover doesn't rush things and is very thorough which amazes me in this current medical climate.
Hope Mayo can help you.
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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?
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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
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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
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Helpful -
Hug
1 ReactionHas 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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Like -
Helpful -
Hug
1 ReactionHaven’t been prescribed Imuran. But have tried Prednisone and and (pyridostigmine) mestinon but those didn’t work well for me.
Did have surgery to lift lid and this improved vision but lid still droops.
Also have Cicatricial Pemphigoid. Taking A generic for Cellcept (Mycophenolate) which is something I can stay on long term, while prednisone is not a long term option for this condition. This drug has not help my OMG right eye only. If you had success with prednisone may Cellcept could help too??
I had a CT scan to check for a thymoma, but that was negative. I did hear if you do have a thymoma there has been success against the generalized MG.
News for us both, the longer it stays ocular (2+yrs) there is an 85% chance it will not progress to the rest of our body.
I got appointments for tests and doctors at Mayo on July 29th for second opinion on all.
Will post results after that.
Good Luck
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2 ReactionsYeah I'm not sure why she gave me a mirror on instead of CellCept. I've been on it for a few days now and nothing happening but she said it wouldn't change anything for a while still on the 20 mg of prednisone which helps but I'm not as good as I was last year, I think mine has gone generalized. I can swallow, but I think the lungs are affected. Yeah I'm not sure why she gave me Imran instead of CellCept. I've been on it for a few days now and nothing happening but she said it wouldn't change anything for a while still on the 20 mg of prednisone which helps but I'm not as good as I was last year, I think mine has gone generalized. I can swallow, but I think the lungs are affected. I had a good year one just a low-dose of prednisone, 2.5 and the Mestinon just once a day got me back to normal. But this spring my eye didn't droop, but i had double vision and some lung issues so had to up Prednisone to 20mg and mestinon 3-4 times a day. That helps, but I am still not normal if you know what I mean.
With the CellCept was it effective soon after you began taking it?
Although I showed no evidence on the CT of a thymoma they suggested the thymectomy so I had that January 2023 in hopes, it would keep it from generalizing.
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1 ReactionSorry, I didn't edit that will not mirror which would've been funny but Imuran
And Hope/ you stay at ocular or that disappears wouldn't that be nice?
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1 ReactionCellcept was not effective in preventing eye droop or the “brain-nerve-muscle” communication caused by MG. It is being used to slow the Pemphigoid disease progression of my corneas. To have both is even more rare.
I had heard that Cellcept is a long term use (probably rest of my life) option because prednisone isn’t. although not the same drug may help fight the same battles. Since drugs that seemed to help you didn’t help me, I was curious if cellcept might help you too.
So far I am lucky, no double vision, no swallowing problems and other muscles do get the signals from brain. Sounds like yours may be moving to other parts of your body and that puts your condition at a whole new level. Keep fighting learning and listening. It’s all any of us can do. It’s hard to stay positive all the time especially when my issue is constant. So I try and remind myself to be thankful for the so many other positives things I do have.
My eye droop began Dec of 2020 and has stayed ocular only. I am going to engage another set of doctors at Mayo to continue my fight and kearn more. Have you been, or are you being, treated at the Mayo Clinic?
-
Like -
Helpful -
Hug
2 ReactionsNo, I am in the Detroit area so I am seeing Dr. Grover at Henry Ford who seems to have a good knowledge of the disease
I had initially seen virtually a doctor from Northwestern Hosp in Chicago where my daughter-in-law works in neurology. Then I tried a University of Michigan doctor, who just seemed a bit too unconcerned. Dr. Grover doesn't rush things and is very thorough which amazes me in this current medical climate.
Hope Mayo can help you.
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Like -
Helpful -
Hug
1 Reaction