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?
Thank you for tagging me. When I went to Mayo last month, I had several tests, with the main 1 being the ENG, and Myasthenia Gravis was ruled out. I was diagnosed with Parkinsonism. I do have several symptoms of PD, but they are very slight but seem to be increasing. So I will continue to see how I progress.
Thank you for tagging me. When I went to Mayo last month, I had several tests, with the main 1 being the ENG, and Myasthenia Gravis was ruled out. I was diagnosed with Parkinsonism. I do have several symptoms of PD, but they are very slight but seem to be increasing. So I will continue to see how I progress.
Thanks for your response. One of my appointments is for that ENG test. I am staying positive about learning something new but not expecting anything. I’ve not had that test yet.
Wishing you the best possible outcome.
Thanks for your response. One of my appointments is for that ENG test. I am staying positive about learning something new but not expecting anything. I’ve not had that test yet.
Wishing you the best possible outcome.
I was fully expecting the ENG test to confirm MG, but it did not. Blood tests did not confirm it, either. The Parkinson diagnosis was from the Mayo doctor in charge of all of my treatment/tests, and he observed some PD symptoms that I showed but wasn't aware of. I hope you will have the ENG test and get a result one way or another. Knowledge of what we are dealing with is so important. I wish you well in your testing.
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.
I have OMG diagnosed June 2021 prescribed MESTINON 60MG HALF TAB 3 X DAY FOR 1 WEEK. Graduate 1 Tab 3x day. I went off medication could not handle Diarrhea. Will have appt. with Neurology soon & see what they say. My condition has not changed. It is not real bad. I just have what I call a lazy right eye. I think I was born with OMG. The eye doctor FROZE MY EYES FOR 1 MINUTE. IT WAS A VERY PAINFULL TEST. Then I had blood tests to confirm OMG. When I took my medication I noticed the eyelid lifted almost immediately. It works very fast within 30 min. The doctor confirmed that is what it does. I have been advised to wear a medical bracelet incase I have a breathing problem & cannot communicate with medical staff. That way they know to go right to the source of OMG & bypass other tests that would delay the treatment I need. Won't take Prednisone because of side effects. Boomerang12
I have OMG diagnosed June 2021 prescribed MESTINON 60MG HALF TAB 3 X DAY FOR 1 WEEK. Graduate 1 Tab 3x day. I went off medication could not handle Diarrhea. Will have appt. with Neurology soon & see what they say. My condition has not changed. It is not real bad. I just have what I call a lazy right eye. I think I was born with OMG. The eye doctor FROZE MY EYES FOR 1 MINUTE. IT WAS A VERY PAINFULL TEST. Then I had blood tests to confirm OMG. When I took my medication I noticed the eyelid lifted almost immediately. It works very fast within 30 min. The doctor confirmed that is what it does. I have been advised to wear a medical bracelet incase I have a breathing problem & cannot communicate with medical staff. That way they know to go right to the source of OMG & bypass other tests that would delay the treatment I need. Won't take Prednisone because of side effects. Boomerang12
Thanks for the info Boomarang. We sound very similar. I had the same problem with pyridostigmine, the generic for mestinon, so I stopped. Interesting to know how fast it worked for you. The surgery helped lift my lid so my vision is “less” affected. It still droops. I may try mestinon again now that I know more of how this disease acts on my body. For eyelid lift you might want to try Uneeq eye drops just to see if they help lift the lid. They did seem to help me sometimes, but if out in the sun my Ptosis eye labors greatly so I have begun a habit of just allowing it to close and just use one eye. If I truly need what I call stereo vision, I’ll lift it with my hand. I have heard about eye glass frames that have a built in crutch but have not found a supplier.
Never had the freeze test, but if all our tests are just a confirmation of OMG I have a good test… look down for 10 minutes…reading a book… then look into the mirror… my eyes look and feel normal… but wait for it ….keep looking into mirror, and I can watch my lid fall…Myasthenia Gravis, Ocular style confirmed. I’m still going to Mayo and will post that experience. Thanks again.
I have OMG diagnosed June 2021 prescribed MESTINON 60MG HALF TAB 3 X DAY FOR 1 WEEK. Graduate 1 Tab 3x day. I went off medication could not handle Diarrhea. Will have appt. with Neurology soon & see what they say. My condition has not changed. It is not real bad. I just have what I call a lazy right eye. I think I was born with OMG. The eye doctor FROZE MY EYES FOR 1 MINUTE. IT WAS A VERY PAINFULL TEST. Then I had blood tests to confirm OMG. When I took my medication I noticed the eyelid lifted almost immediately. It works very fast within 30 min. The doctor confirmed that is what it does. I have been advised to wear a medical bracelet incase I have a breathing problem & cannot communicate with medical staff. That way they know to go right to the source of OMG & bypass other tests that would delay the treatment I need. Won't take Prednisone because of side effects. Boomerang12
I never had the diarrhea or stomach issues. They prescribed a Prilosec type drug that I could take if that was an issue.
Yeah, I have a tag I carry on my purse probably safer to have a bracelet, but I don't do that. I know there are certain anesthetics and and antibiotics we cannot handle if we have Myasthenia gravis.
Thanks for your story
Had tests for ocular myasthenia Gravis and they were negative per local doctor consultation with Mayo. Dr still thinks I have ocular MG . So had tests done for 2nd opinion at a different medical school. They said not likely. Now 18 months later I still am being told by my local PCP and local optometrist that my eyelid drooping, inability to focus at times, along with swallow difficulties and imbalance when ambulating are strong signs of ocular MG. What can I do to find out? I live in a rural community with limited resources and so have to go 100 miles or so to find a Dr. for this.
Had tests for ocular myasthenia Gravis and they were negative per local doctor consultation with Mayo. Dr still thinks I have ocular MG . So had tests done for 2nd opinion at a different medical school. They said not likely. Now 18 months later I still am being told by my local PCP and local optometrist that my eyelid drooping, inability to focus at times, along with swallow difficulties and imbalance when ambulating are strong signs of ocular MG. What can I do to find out? I live in a rural community with limited resources and so have to go 100 miles or so to find a Dr. for this.
Find a doctor who specializes in seronegative myasthenia gravis. I’ve just been dx’d. I’m not sure there isn’t something going on that’s more rare for most of us but my understanding is that many of the treatments are similar. At least prednisone is often used in many of the autoimmune diseases. Eyewiki has differential diagnosis to make sure you’ve been tested for & and the myasthenia gravis foundation of America has a seronegative support group I’m hoping to attend but haven’t yet. Good luck. There’s nothing quite like floating in the ambiguity of rare diagnosis. I’m glad at least your local docs are behind you. 💪💪💪💪💪
My Myasthenia Gravis (MG) was diagnosed with a blood test, ordered by surgeon after he shortened the tendon and muscle and my lid did not respond appropriately. Then further confirmed by neurologist as only “Ocular” MG.
Friend of mine, when comparing our symptoms has something called OPMD (ocular pharyngeal muscular dystrophy) and it sounded a lot like what you were describing. So may be another thing to learn about.
I guess Blood tests for MG have ranges. Maybe yours was out side of those ranges. You may already know them, but here are what mine showed. There ate 3 markers they tested for, and I believe they are to measure your immune system or autoimmune in my case.
1 Blocking
2 Binding
3 Modulating
(My 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)
I asked for second blood test and all docs said not necessary. With all 3 of these indicators showing MG pretty certain of what I have.
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.
I’ve been on prednisone for 7 months, between 10&15mgs. Still having issues. Cellcept on deck. It’s amazing that there’s actually other people having a similar experience! So glad to have found these boards!
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Thank you for tagging me. When I went to Mayo last month, I had several tests, with the main 1 being the ENG, and Myasthenia Gravis was ruled out. I was diagnosed with Parkinsonism. I do have several symptoms of PD, but they are very slight but seem to be increasing. So I will continue to see how I progress.
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Helpful -
Hug
3 ReactionsThanks for your response. One of my appointments is for that ENG test. I am staying positive about learning something new but not expecting anything. I’ve not had that test yet.
Wishing you the best possible outcome.
-
Like -
Helpful -
Hug
1 ReactionI was fully expecting the ENG test to confirm MG, but it did not. Blood tests did not confirm it, either. The Parkinson diagnosis was from the Mayo doctor in charge of all of my treatment/tests, and he observed some PD symptoms that I showed but wasn't aware of. I hope you will have the ENG test and get a result one way or another. Knowledge of what we are dealing with is so important. I wish you well in your testing.
-
Like -
Helpful -
Hug
1 ReactionI have OMG diagnosed June 2021 prescribed MESTINON 60MG HALF TAB 3 X DAY FOR 1 WEEK. Graduate 1 Tab 3x day. I went off medication could not handle Diarrhea. Will have appt. with Neurology soon & see what they say. My condition has not changed. It is not real bad. I just have what I call a lazy right eye. I think I was born with OMG. The eye doctor FROZE MY EYES FOR 1 MINUTE. IT WAS A VERY PAINFULL TEST. Then I had blood tests to confirm OMG. When I took my medication I noticed the eyelid lifted almost immediately. It works very fast within 30 min. The doctor confirmed that is what it does. I have been advised to wear a medical bracelet incase I have a breathing problem & cannot communicate with medical staff. That way they know to go right to the source of OMG & bypass other tests that would delay the treatment I need. Won't take Prednisone because of side effects. Boomerang12
-
Like -
Helpful -
Hug
2 ReactionsThanks for the info Boomarang. We sound very similar. I had the same problem with pyridostigmine, the generic for mestinon, so I stopped. Interesting to know how fast it worked for you. The surgery helped lift my lid so my vision is “less” affected. It still droops. I may try mestinon again now that I know more of how this disease acts on my body. For eyelid lift you might want to try Uneeq eye drops just to see if they help lift the lid. They did seem to help me sometimes, but if out in the sun my Ptosis eye labors greatly so I have begun a habit of just allowing it to close and just use one eye. If I truly need what I call stereo vision, I’ll lift it with my hand. I have heard about eye glass frames that have a built in crutch but have not found a supplier.
Never had the freeze test, but if all our tests are just a confirmation of OMG I have a good test… look down for 10 minutes…reading a book… then look into the mirror… my eyes look and feel normal… but wait for it ….keep looking into mirror, and I can watch my lid fall…Myasthenia Gravis, Ocular style confirmed. I’m still going to Mayo and will post that experience. Thanks again.
-
Like -
Helpful -
Hug
2 ReactionsI never had the diarrhea or stomach issues. They prescribed a Prilosec type drug that I could take if that was an issue.
Yeah, I have a tag I carry on my purse probably safer to have a bracelet, but I don't do that. I know there are certain anesthetics and and antibiotics we cannot handle if we have Myasthenia gravis.
Thanks for your story
-
Like -
Helpful -
Hug
1 ReactionHad tests for ocular myasthenia Gravis and they were negative per local doctor consultation with Mayo. Dr still thinks I have ocular MG . So had tests done for 2nd opinion at a different medical school. They said not likely. Now 18 months later I still am being told by my local PCP and local optometrist that my eyelid drooping, inability to focus at times, along with swallow difficulties and imbalance when ambulating are strong signs of ocular MG. What can I do to find out? I live in a rural community with limited resources and so have to go 100 miles or so to find a Dr. for this.
-
Like -
Helpful -
Hug
2 ReactionsFind a doctor who specializes in seronegative myasthenia gravis. I’ve just been dx’d. I’m not sure there isn’t something going on that’s more rare for most of us but my understanding is that many of the treatments are similar. At least prednisone is often used in many of the autoimmune diseases. Eyewiki has differential diagnosis to make sure you’ve been tested for & and the myasthenia gravis foundation of America has a seronegative support group I’m hoping to attend but haven’t yet. Good luck. There’s nothing quite like floating in the ambiguity of rare diagnosis. I’m glad at least your local docs are behind you. 💪💪💪💪💪
-
Like -
Helpful -
Hug
3 ReactionsMy Myasthenia Gravis (MG) was diagnosed with a blood test, ordered by surgeon after he shortened the tendon and muscle and my lid did not respond appropriately. Then further confirmed by neurologist as only “Ocular” MG.
Friend of mine, when comparing our symptoms has something called OPMD (ocular pharyngeal muscular dystrophy) and it sounded a lot like what you were describing. So may be another thing to learn about.
I guess Blood tests for MG have ranges. Maybe yours was out side of those ranges. You may already know them, but here are what mine showed. There ate 3 markers they tested for, and I believe they are to measure your immune system or autoimmune in my case.
1 Blocking
2 Binding
3 Modulating
(My 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)
I asked for second blood test and all docs said not necessary. With all 3 of these indicators showing MG pretty certain of what I have.
-
Like -
Helpful -
Hug
1 ReactionI’ve been on prednisone for 7 months, between 10&15mgs. Still having issues. Cellcept on deck. It’s amazing that there’s actually other people having a similar experience! So glad to have found these boards!
-
Like -
Helpful -
Hug
2 Reactions