Colleen Young, Connect Director | @colleenyoung | Jul 11 2:34pm
Hi @wcburns2, I expanded the title of your discussion to reflect your question and included it in the Eye Conditions and Visiting Mayo Clinic support groups as well. I'm tagging fellow members like @ginnycoleman@Erinmfs@laurievr@shellyleon_dd@skhollandmt who I believe have been treated for myasthenia gravis (MG) at Mayo Clinic, some of who have eye issues related to MG. They can share more about their experiences at Mayo.
I see in other comments that you have an upcoming appointment at Mayo Clinic later this month. That's fantastic. You're in good hands at Mayo Clinic.
As someone who has been dealing with ocular MG for several years and also living with ocular cicatricial pemphigoid, I'm sure that you have a list of concerns and questions for the experts at Mayo Clinic. What questions have you prepared? Which Mayo Clinic will you be going to: AZ, FL or MN?
I’ll be going up to MN from Indiana. I’ve been dealing with it for about 4 years now so Mayo is to get a whole new fresh set of opinions as I envision Mayo to be on the leading edge of technology. Main question will be if a 3rd attempt with a plastic surgeon is worth a try …pros vs cons to further lift my lid. The Pemphigoid is being treated by a local cornea specialist locally and is an issue that is currently under as much control as possible. List of questions is long and still working on it. Thanks for reaching out.
Bill
Hi @wcburns2, I expanded the title of your discussion to reflect your question and included it in the Eye Conditions and Visiting Mayo Clinic support groups as well. I'm tagging fellow members like @ginnycoleman@Erinmfs@laurievr@shellyleon_dd@skhollandmt who I believe have been treated for myasthenia gravis (MG) at Mayo Clinic, some of who have eye issues related to MG. They can share more about their experiences at Mayo.
I see in other comments that you have an upcoming appointment at Mayo Clinic later this month. That's fantastic. You're in good hands at Mayo Clinic.
As someone who has been dealing with ocular MG for several years and also living with ocular cicatricial pemphigoid, I'm sure that you have a list of concerns and questions for the experts at Mayo Clinic. What questions have you prepared? Which Mayo Clinic will you be going to: AZ, FL or MN?
I will be very interested to see how things go at Mayo
I started with ocular which seems to have spread, despite having my thymus removed at Henry Ford Hospital, Detroit
Currently on 20 mg of prednisone after trying Imuran and finding it affected my liver. Guess I am lucky though, as my eye doesn't close ever since the initial prednisone treatment. I just have the double vision and now some breathing issues.
I hope Mayo helps you!
I will be very interested to see how things go at Mayo
I started with ocular which seems to have spread, despite having my thymus removed at Henry Ford Hospital, Detroit
Currently on 20 mg of prednisone after trying Imuran and finding it affected my liver. Guess I am lucky though, as my eye doesn't close ever since the initial prednisone treatment. I just have the double vision and now some breathing issues.
I hope Mayo helps you!
My ocular myasthenia gravis was easy to pin down once they did the blood test for it but I guess there are some that don't show the markers in the blood, and still could have it
Started off having a heavy, hard to fully open, right eye. Droopy right eyelid would actually cover part of my pupil so vision was affected. Cosmetically not desirable but, vision was my issue. Would have to physically lift my lid with my hand if I really wanted to see clearly. If I did not use all muscles in my forehead and eyes, it would completely close.
Cosmetic surgeon diagnosed Ptosis and recommended lid lifting surgery for right eye. My doctor explained that if we raise my right eye lid with surgery by shortening the tendon, my eye muscles could lift the lid better as age (66 at the time) can cause the tendon to become stretched. He mentioned the high probability that by lifting the right eyelid I could experience the “Hering effect” which could cause my left lid to droop, so he recommend I make a little adjustment to lift my left upper eye lid.
While he was looking at my eyes he became concerned with the excessive redness. So to rule out Cicatricial Pemphigoid he recommended a cornea biopsy which came back negative. So now my additional symptoms caused him to be extremely concerned with my lower lids having turned inward (Entropion). I went ahead with surgery for Ptosis on my upper right lid) surgery on upper left lid to counter the Hering response) and surgery on both lower lids to correct the Entropion.
The results were not completely successful. Only minor improvement of right upper lid. On follow up visit describing my symptoms, when first waking up or after looking downward while reading, my eye would look and feel normal. But watching it in the mirror after about one minute I could see and feel the droop return. The doctor said that is a classic symptom of OMG. So he had me tested for Myasthenia Gravis (MG) and I tested positive.
(Blood test results:
Blocking was 48, range should be 0-26
Binding was 2, should less than point .4
Modulation 41, should be greater than 45)
This blood test changed my treatment plan and involved subsequent steps with a neurologist. 1st step was CT scan of chest looking for a thymoma (negative). So now it was decided by neurologist to put the effort into drugs to see if we could counter the autoimmune response of the MG. Because it was only affecting my right eye a new diagnosis became more pinpointed to OMG (ocular myasthenia gravis). I started seeing the Neurologist to track progress to determine if the MG would move to other parts of my body. I have learned the eyes can be one of the early indicators of Generalized MG.
I first realized I had an issue in December of 2020. But in working with the Neurologist I had a very possible first symptom event in the fall of 2018 while being put under for an appendectomy. My right eye closed immediately while my good left eye stayed open until I went completely under. The neurologist said we could use that as my first possible episode on a timeline.
At first the Neurologist tried pyridostigmine only, because at the time he did not want to introduce a steroid due to a Covid infection risk. We did try prednisone later, before 2nd surgery but no help that I could determine. I have since had a second surgery only on my right upper lid in March of 2023. That surgery did add some additional lift to my right lid giving me more time the lid stays above pupil and more often, but I still struggle. Trying Upneeq on limited basis and feel it can and does add very small amount of lift for a short period of time.
Considering a third surgery attempt to keep lid above pupil. In my quest for answers and the best solutions, the Mayo Clinic keeps coming up so I started with this Mayo Connect site and learned how to get an appointment. As time goes on I continue to see a cornea specialist who has diagnosed me with Pemphigoid. A negative cornea biopsy for pemphigoid is not always a 100% surety. Currently taking 2000 mg Mycophenolate (CellCept) daily. Cornea specialist feels we have it under control for now.
I will decide on 3rd surgery attempt after being seen and treated at Mayo Clinic. Sorry if this is a long story, but that is my experience with Ocular MG.
And I was very interested to read about your experience as I haven't spoken to anybody else with ocular or any form of Myasthenia gravis. I guess I was lucky that the steroid and Mestinon did the trick and initially I was only on 2.5 mg of prednisone which didn't worry anybody but now that I've had to go up to 20 and still have some issues they're trying to find something else
Not sure why cellcept hasn't been tried. Maybe that'll be the next step. But again, after that initial low, left eyelid that helped them diagnose it I have not had any eyelid issues. It's the double vision.
And I was very interested to read about your experience as I haven't spoken to anybody else with ocular or any form of Myasthenia gravis. I guess I was lucky that the steroid and Mestinon did the trick and initially I was only on 2.5 mg of prednisone which didn't worry anybody but now that I've had to go up to 20 and still have some issues they're trying to find something else
Not sure why cellcept hasn't been tried. Maybe that'll be the next step. But again, after that initial low, left eyelid that helped them diagnose it I have not had any eyelid issues. It's the double vision.
Cellcept is being used to fight the pemphigoid you can ask your doc but not sure it will fight MG. Mestinon or pyridostigmine is best replacement for long term cause you can’t stay at that dose of prednisone. It a unique and fairly rare. Doctors don’t have a lot of answers yet. Hope you have more success
Started off having a heavy, hard to fully open, right eye. Droopy right eyelid would actually cover part of my pupil so vision was affected. Cosmetically not desirable but, vision was my issue. Would have to physically lift my lid with my hand if I really wanted to see clearly. If I did not use all muscles in my forehead and eyes, it would completely close.
Cosmetic surgeon diagnosed Ptosis and recommended lid lifting surgery for right eye. My doctor explained that if we raise my right eye lid with surgery by shortening the tendon, my eye muscles could lift the lid better as age (66 at the time) can cause the tendon to become stretched. He mentioned the high probability that by lifting the right eyelid I could experience the “Hering effect” which could cause my left lid to droop, so he recommend I make a little adjustment to lift my left upper eye lid.
While he was looking at my eyes he became concerned with the excessive redness. So to rule out Cicatricial Pemphigoid he recommended a cornea biopsy which came back negative. So now my additional symptoms caused him to be extremely concerned with my lower lids having turned inward (Entropion). I went ahead with surgery for Ptosis on my upper right lid) surgery on upper left lid to counter the Hering response) and surgery on both lower lids to correct the Entropion.
The results were not completely successful. Only minor improvement of right upper lid. On follow up visit describing my symptoms, when first waking up or after looking downward while reading, my eye would look and feel normal. But watching it in the mirror after about one minute I could see and feel the droop return. The doctor said that is a classic symptom of OMG. So he had me tested for Myasthenia Gravis (MG) and I tested positive.
(Blood test results:
Blocking was 48, range should be 0-26
Binding was 2, should less than point .4
Modulation 41, should be greater than 45)
This blood test changed my treatment plan and involved subsequent steps with a neurologist. 1st step was CT scan of chest looking for a thymoma (negative). So now it was decided by neurologist to put the effort into drugs to see if we could counter the autoimmune response of the MG. Because it was only affecting my right eye a new diagnosis became more pinpointed to OMG (ocular myasthenia gravis). I started seeing the Neurologist to track progress to determine if the MG would move to other parts of my body. I have learned the eyes can be one of the early indicators of Generalized MG.
I first realized I had an issue in December of 2020. But in working with the Neurologist I had a very possible first symptom event in the fall of 2018 while being put under for an appendectomy. My right eye closed immediately while my good left eye stayed open until I went completely under. The neurologist said we could use that as my first possible episode on a timeline.
At first the Neurologist tried pyridostigmine only, because at the time he did not want to introduce a steroid due to a Covid infection risk. We did try prednisone later, before 2nd surgery but no help that I could determine. I have since had a second surgery only on my right upper lid in March of 2023. That surgery did add some additional lift to my right lid giving me more time the lid stays above pupil and more often, but I still struggle. Trying Upneeq on limited basis and feel it can and does add very small amount of lift for a short period of time.
Considering a third surgery attempt to keep lid above pupil. In my quest for answers and the best solutions, the Mayo Clinic keeps coming up so I started with this Mayo Connect site and learned how to get an appointment. As time goes on I continue to see a cornea specialist who has diagnosed me with Pemphigoid. A negative cornea biopsy for pemphigoid is not always a 100% surety. Currently taking 2000 mg Mycophenolate (CellCept) daily. Cornea specialist feels we have it under control for now.
I will decide on 3rd surgery attempt after being seen and treated at Mayo Clinic. Sorry if this is a long story, but that is my experience with Ocular MG.
Thank you for that input. I’m not sure they reflect my dad’s situation, but it sounds like mine. I’m rather surprised. I’ve been under ophthalmologists’ care (cornea specialists at UNC and Duke) for years due to my dry eye and Salzmann’s Nodules. I’ve also had two blepharoplasty surgeries and a revision on one eye. The second was due to ptosis. Then revision on one lid. I was on prednisone drops for a while. MG was never on my radar. Hmmm….coincidence I guess. I’ve had other symptoms too. I’m currently seeing a neurologist and upcoming with rheumatologist. Recently, had positive ANA.
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Hi @wcburns2, I expanded the title of your discussion to reflect your question and included it in the Eye Conditions and Visiting Mayo Clinic support groups as well. I'm tagging fellow members like @ginnycoleman @Erinmfs @laurievr @shellyleon_dd @skhollandmt who I believe have been treated for myasthenia gravis (MG) at Mayo Clinic, some of who have eye issues related to MG. They can share more about their experiences at Mayo.
I see in other comments that you have an upcoming appointment at Mayo Clinic later this month. That's fantastic. You're in good hands at Mayo Clinic.
As someone who has been dealing with ocular MG for several years and also living with ocular cicatricial pemphigoid, I'm sure that you have a list of concerns and questions for the experts at Mayo Clinic. What questions have you prepared? Which Mayo Clinic will you be going to: AZ, FL or MN?
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4 ReactionsI’ll be going up to MN from Indiana. I’ve been dealing with it for about 4 years now so Mayo is to get a whole new fresh set of opinions as I envision Mayo to be on the leading edge of technology. Main question will be if a 3rd attempt with a plastic surgeon is worth a try …pros vs cons to further lift my lid. The Pemphigoid is being treated by a local cornea specialist locally and is an issue that is currently under as much control as possible. List of questions is long and still working on it. Thanks for reaching out.
Bill
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1 ReactionCould you describe some of your experience with ocular MG?
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1 ReactionI will be very interested to see how things go at Mayo
I started with ocular which seems to have spread, despite having my thymus removed at Henry Ford Hospital, Detroit
Currently on 20 mg of prednisone after trying Imuran and finding it affected my liver. Guess I am lucky though, as my eye doesn't close ever since the initial prednisone treatment. I just have the double vision and now some breathing issues.
I hope Mayo helps you!
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2 ReactionsThank you! You as well. I’m inquiring ref. my dad. Not sure what’s going on with his eyes, after multiple exams.
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1 ReactionMy ocular myasthenia gravis was easy to pin down once they did the blood test for it but I guess there are some that don't show the markers in the blood, and still could have it
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3 ReactionsMayo posts
Reply to @ceila16:
Started off having a heavy, hard to fully open, right eye. Droopy right eyelid would actually cover part of my pupil so vision was affected. Cosmetically not desirable but, vision was my issue. Would have to physically lift my lid with my hand if I really wanted to see clearly. If I did not use all muscles in my forehead and eyes, it would completely close.
Cosmetic surgeon diagnosed Ptosis and recommended lid lifting surgery for right eye. My doctor explained that if we raise my right eye lid with surgery by shortening the tendon, my eye muscles could lift the lid better as age (66 at the time) can cause the tendon to become stretched. He mentioned the high probability that by lifting the right eyelid I could experience the “Hering effect” which could cause my left lid to droop, so he recommend I make a little adjustment to lift my left upper eye lid.
While he was looking at my eyes he became concerned with the excessive redness. So to rule out Cicatricial Pemphigoid he recommended a cornea biopsy which came back negative. So now my additional symptoms caused him to be extremely concerned with my lower lids having turned inward (Entropion). I went ahead with surgery for Ptosis on my upper right lid) surgery on upper left lid to counter the Hering response) and surgery on both lower lids to correct the Entropion.
The results were not completely successful. Only minor improvement of right upper lid. On follow up visit describing my symptoms, when first waking up or after looking downward while reading, my eye would look and feel normal. But watching it in the mirror after about one minute I could see and feel the droop return. The doctor said that is a classic symptom of OMG. So he had me tested for Myasthenia Gravis (MG) and I tested positive.
(Blood test results:
Blocking was 48, range should be 0-26
Binding was 2, should less than point .4
Modulation 41, should be greater than 45)
This blood test changed my treatment plan and involved subsequent steps with a neurologist. 1st step was CT scan of chest looking for a thymoma (negative). So now it was decided by neurologist to put the effort into drugs to see if we could counter the autoimmune response of the MG. Because it was only affecting my right eye a new diagnosis became more pinpointed to OMG (ocular myasthenia gravis). I started seeing the Neurologist to track progress to determine if the MG would move to other parts of my body. I have learned the eyes can be one of the early indicators of Generalized MG.
I first realized I had an issue in December of 2020. But in working with the Neurologist I had a very possible first symptom event in the fall of 2018 while being put under for an appendectomy. My right eye closed immediately while my good left eye stayed open until I went completely under. The neurologist said we could use that as my first possible episode on a timeline.
At first the Neurologist tried pyridostigmine only, because at the time he did not want to introduce a steroid due to a Covid infection risk. We did try prednisone later, before 2nd surgery but no help that I could determine. I have since had a second surgery only on my right upper lid in March of 2023. That surgery did add some additional lift to my right lid giving me more time the lid stays above pupil and more often, but I still struggle. Trying Upneeq on limited basis and feel it can and does add very small amount of lift for a short period of time.
Considering a third surgery attempt to keep lid above pupil. In my quest for answers and the best solutions, the Mayo Clinic keeps coming up so I started with this Mayo Connect site and learned how to get an appointment. As time goes on I continue to see a cornea specialist who has diagnosed me with Pemphigoid. A negative cornea biopsy for pemphigoid is not always a 100% surety. Currently taking 2000 mg Mycophenolate (CellCept) daily. Cornea specialist feels we have it under control for now.
I will decide on 3rd surgery attempt after being seen and treated at Mayo Clinic. Sorry if this is a long story, but that is my experience with Ocular MG.
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2 ReactionsAnd I was very interested to read about your experience as I haven't spoken to anybody else with ocular or any form of Myasthenia gravis. I guess I was lucky that the steroid and Mestinon did the trick and initially I was only on 2.5 mg of prednisone which didn't worry anybody but now that I've had to go up to 20 and still have some issues they're trying to find something else
Not sure why cellcept hasn't been tried. Maybe that'll be the next step. But again, after that initial low, left eyelid that helped them diagnose it I have not had any eyelid issues. It's the double vision.
-
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Helpful -
Hug
2 ReactionsCellcept is being used to fight the pemphigoid you can ask your doc but not sure it will fight MG. Mestinon or pyridostigmine is best replacement for long term cause you can’t stay at that dose of prednisone. It a unique and fairly rare. Doctors don’t have a lot of answers yet. Hope you have more success
-
Like -
Helpful -
Hug
1 ReactionThank you for that input. I’m not sure they reflect my dad’s situation, but it sounds like mine. I’m rather surprised. I’ve been under ophthalmologists’ care (cornea specialists at UNC and Duke) for years due to my dry eye and Salzmann’s Nodules. I’ve also had two blepharoplasty surgeries and a revision on one eye. The second was due to ptosis. Then revision on one lid. I was on prednisone drops for a while. MG was never on my radar. Hmmm….coincidence I guess. I’ve had other symptoms too. I’m currently seeing a neurologist and upcoming with rheumatologist. Recently, had positive ANA.
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Helpful -
Hug
1 Reaction