That is how my 0MG started and luckily, I happen to have an appointment with an eye doctor, who recognized the symptom and sent me for the blood test. I was shocked when I was positive for Myasthenia gravis. With a low-dose of prednisone and the Mestinon three times a day I am usually symptom-free, unless hit by stress then I can have some double vision.
Some go years to get a diagnosis. Had mine in 36 hours. You need an acetylcholine receptor test. (blood test) For sure a Neurologist. Sooner is better.
It has been years for me. I have only the drooping left eye. I forget about it until I see certain photos or on video.
I appreciate you directing me to a neurologist.
Savvyme1…Blood test was necessary to diagnose the MG. I have had Ocular Myasthenia Gravis (OMG) 4 years now. 6 months ago finally went to Mayo. 90 mg Mestinon four times a day was the key. It has helped with the Ptosis in my one eye lid. After 4 years …and two surgeries to lift it, a neurologist at Mayo, Dr Madigan became my hero. Wanted me to use Mestinon on a strict regimen. Also Prescribed Glycopyrrolate to help minimize some of the diarrhea Pryidosigmine (Mestinon genetic) can cause.
I was diagnosed April 2022 so this will be three years this April and I had heard that if it had transitioned after three years we might be OK but it will stay. OMG. I am 75 now. So I take 2.5 Prednisone as well as the Mestinon two or three times a day are you able to take just mestinon and no steroid?
I had my I was removed two years ago at my neurologist suggestion even though it had Atrevor kid, she said some studies show the timer says part of the issue
One more thing when I hit the following incident fainted due to heat at the hospital they were lax about giving me my prednisone and Mestinon but fortunately I had some with me and treated myself still developed double vision, and when I saw my primary, she said they should've given me a dose of hydrocortisone when I had an incident like that. Has anybody else heard that?
Some go years to get a diagnosis. Had mine in 36 hours. You need an acetylcholine receptor test. (blood test) For sure a Neurologist. Sooner is better.
Depending on your symptoms, it might be a more limited ocular MG. I too have a droopy eye,
I think I had the first blood test and results were negative Neurologist said if that is negative, there are other tests that need to be done to rule it Out. I believe the next step is an EMG. DOES ANYONE ON THIS LIST KNOW? My neurologist said there is a final test but very few hospitals do it. If there is anyone who knows, please post. I already have Sjogrens disease and systemic complications from it. as 77mith posted - "sooner is better" (:
I was diagnosed April 2022 so this will be three years this April and I had heard that if it had transitioned after three years we might be OK but it will stay. OMG. I am 75 now. So I take 2.5 Prednisone as well as the Mestinon two or three times a day are you able to take just mestinon and no steroid?
I had my I was removed two years ago at my neurologist suggestion even though it had Atrevor kid, she said some studies show the timer says part of the issue
One more thing when I hit the following incident fainted due to heat at the hospital they were lax about giving me my prednisone and Mestinon but fortunately I had some with me and treated myself still developed double vision, and when I saw my primary, she said they should've given me a dose of hydrocortisone when I had an incident like that. Has anybody else heard that?
@Michigan Jan… I don’t take a “ steroid “ per se but I do take Cell Cept 2000 mg per day for a different eye issue. I take that is for long term use and “sorta like, or used in place of, Prednisone”
@cblue
I have had an EMG test but it just confirmed MG diagnosis from my blood test 4 yrs ago that was positive, so a little different than your situation with blood testing being negative for MG. It was a very uncomfortable test. My MG problem is only in my eye. (OMG). The longer is stays in your eyes only, odds are better it doesn’t progress to the rest of your body or become generalized.
@Michigan Jan… I don’t take a “ steroid “ per se but I do take Cell Cept 2000 mg per day for a different eye issue. I take that is for long term use and “sorta like, or used in place of, Prednisone”
@cblue
I have had an EMG test but it just confirmed MG diagnosis from my blood test 4 yrs ago that was positive, so a little different than your situation with blood testing being negative for MG. It was a very uncomfortable test. My MG problem is only in my eye. (OMG). The longer is stays in your eyes only, odds are better it doesn’t progress to the rest of your body or become generalized.
Thanks the neurologist isn't sure it's MG-- the droopy eye may be "twiching" (fancy term for twitching she gave me based on her examination Ican't remember the name of it)--but if it's that instead of drooping, it could be a movement disorder issue that wouldn't need treatment unless the eye drooping or twitching becomes a extremely problematic. But they're still busy diagnosing if it's a MG. I'm beginning to have trouble swallowing, which concerns me because it's a little different than when I have a lack of saliva. I still have a saliva functioning that's reasonably good and is boosted by the medication that take three times a day. (at least it's good based on examination by the oral pathologist who finally diagnosed me.)
Depending on your symptoms, it might be a more limited ocular MG. I too have a droopy eye,
I think I had the first blood test and results were negative Neurologist said if that is negative, there are other tests that need to be done to rule it Out. I believe the next step is an EMG. DOES ANYONE ON THIS LIST KNOW? My neurologist said there is a final test but very few hospitals do it. If there is anyone who knows, please post. I already have Sjogrens disease and systemic complications from it. as 77mith posted - "sooner is better" (:
No, my understanding is that it is harder to get into than Hopkins. What makes you ask? are there advantages to Mayo vs. Hopkins Sjogrens center? PLease lmk why you asked, OK? Thanks, Cheryl
CBlue..I had been dealing with local doctors for 4 years and it wasn’t until I went to Mayo that I had positive and definitive results. Friends talked about for a while and encouraged me to try it so I called Mayo to learn what I needed to do. Documented what I’d been through and then went through the process of making an appointment in Rochester, MN. I live near Indianapolis. It was a well managed set of multiple appoints , from about 9am until 2pm. They are The place that helped me! I recommend giving it a shot anytime there are unanswered questions. I truly believe in the care there and feel you will get answers. I do admit I am biased due to my success. When you are ready, just look into the possibility.
No, my understanding is that it is harder to get into than Hopkins. What makes you ask? are there advantages to Mayo vs. Hopkins Sjogrens center? PLease lmk why you asked, OK? Thanks, Cheryl
And there in exists the rub….”My understanding”. Social media, third party information, even forums like this are no substitute for personally taking action. There is no doubt, access to Center of Excellence health care is challenging, but ultimately “you are in charge of your health”….. So here is the process…. Gather All your records, imaging, tests result, anything you can lay your hands on (yes, it will become a part time job). Then contact Mayo’s scheduling and be prepared for some challenges. If you are OMG, you need to see a neuro-opthalmologist (ophthalmology department) If you are generalized MG, you need to see a neurologist. Be prepared to quickly provide your records (in an organized, newest to oldest order). You can contact either department’s scheduling directly…. If you end up in general scheduling, ask for the department’s scheduling desk at the clinic. Will you get in “tomorrow”, no. The more quality information you have, better opportunities. You will need to be patient, polity, calm, but persistent….your efforts will be rewarded. Personal point of reference. My wife screwed around for 6 months with local healthcare in the Tampa area. I finally said enough, we are going to Mayo (previous patient from the early days of the Jax location). We did what we needed to,do and within a few weeks, on our way. We have no doubt the provider we met with knew the issue before we walked in his office…..yes, they actually read the material provided to determine urgency, appropriateness, available resources and more. My wife is now 3.5 years in from the diagnosis and 4 years since her first symptoms. Is her care at Mayo Jax worth every obstacle and inconvenience…absolutely.
Point to all this is as I said up top….YOU are in charge of your own health and YOU, only YOU must take direct and constructive actions to gain the care you need. Forget the Google machine, social media and even be skeptical of forums like this….. JMHO, YMMV
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2 ReactionsIt has been years for me. I have only the drooping left eye. I forget about it until I see certain photos or on video.
I appreciate you directing me to a neurologist.
-
Like -
Helpful -
Hug
2 ReactionsI was diagnosed April 2022 so this will be three years this April and I had heard that if it had transitioned after three years we might be OK but it will stay. OMG. I am 75 now. So I take 2.5 Prednisone as well as the Mestinon two or three times a day are you able to take just mestinon and no steroid?
I had my I was removed two years ago at my neurologist suggestion even though it had Atrevor kid, she said some studies show the timer says part of the issue
One more thing when I hit the following incident fainted due to heat at the hospital they were lax about giving me my prednisone and Mestinon but fortunately I had some with me and treated myself still developed double vision, and when I saw my primary, she said they should've given me a dose of hydrocortisone when I had an incident like that. Has anybody else heard that?
Depending on your symptoms, it might be a more limited ocular MG. I too have a droopy eye,
I think I had the first blood test and results were negative Neurologist said if that is negative, there are other tests that need to be done to rule it Out. I believe the next step is an EMG. DOES ANYONE ON THIS LIST KNOW? My neurologist said there is a final test but very few hospitals do it. If there is anyone who knows, please post. I already have Sjogrens disease and systemic complications from it. as 77mith posted - "sooner is better" (:
@Michigan Jan… I don’t take a “ steroid “ per se but I do take Cell Cept 2000 mg per day for a different eye issue. I take that is for long term use and “sorta like, or used in place of, Prednisone”
@cblue
I have had an EMG test but it just confirmed MG diagnosis from my blood test 4 yrs ago that was positive, so a little different than your situation with blood testing being negative for MG. It was a very uncomfortable test. My MG problem is only in my eye. (OMG). The longer is stays in your eyes only, odds are better it doesn’t progress to the rest of your body or become generalized.
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Like -
Helpful -
Hug
1 ReactionThanks the neurologist isn't sure it's MG-- the droopy eye may be "twiching" (fancy term for twitching she gave me based on her examination Ican't remember the name of it)--but if it's that instead of drooping, it could be a movement disorder issue that wouldn't need treatment unless the eye drooping or twitching becomes a extremely problematic. But they're still busy diagnosing if it's a MG. I'm beginning to have trouble swallowing, which concerns me because it's a little different than when I have a lack of saliva. I still have a saliva functioning that's reasonably good and is boosted by the medication that take three times a day. (at least it's good based on examination by the oral pathologist who finally diagnosed me.)
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Like -
Helpful -
Hug
1 ReactionCBlue … have you been treated at Mayo Clinic ?
No, my understanding is that it is harder to get into than Hopkins. What makes you ask? are there advantages to Mayo vs. Hopkins Sjogrens center? PLease lmk why you asked, OK? Thanks, Cheryl
CBlue..I had been dealing with local doctors for 4 years and it wasn’t until I went to Mayo that I had positive and definitive results. Friends talked about for a while and encouraged me to try it so I called Mayo to learn what I needed to do. Documented what I’d been through and then went through the process of making an appointment in Rochester, MN. I live near Indianapolis. It was a well managed set of multiple appoints , from about 9am until 2pm. They are The place that helped me! I recommend giving it a shot anytime there are unanswered questions. I truly believe in the care there and feel you will get answers. I do admit I am biased due to my success. When you are ready, just look into the possibility.
And there in exists the rub….”My understanding”. Social media, third party information, even forums like this are no substitute for personally taking action. There is no doubt, access to Center of Excellence health care is challenging, but ultimately “you are in charge of your health”….. So here is the process…. Gather All your records, imaging, tests result, anything you can lay your hands on (yes, it will become a part time job). Then contact Mayo’s scheduling and be prepared for some challenges. If you are OMG, you need to see a neuro-opthalmologist (ophthalmology department) If you are generalized MG, you need to see a neurologist. Be prepared to quickly provide your records (in an organized, newest to oldest order). You can contact either department’s scheduling directly…. If you end up in general scheduling, ask for the department’s scheduling desk at the clinic. Will you get in “tomorrow”, no. The more quality information you have, better opportunities. You will need to be patient, polity, calm, but persistent….your efforts will be rewarded. Personal point of reference. My wife screwed around for 6 months with local healthcare in the Tampa area. I finally said enough, we are going to Mayo (previous patient from the early days of the Jax location). We did what we needed to,do and within a few weeks, on our way. We have no doubt the provider we met with knew the issue before we walked in his office…..yes, they actually read the material provided to determine urgency, appropriateness, available resources and more. My wife is now 3.5 years in from the diagnosis and 4 years since her first symptoms. Is her care at Mayo Jax worth every obstacle and inconvenience…absolutely.
Point to all this is as I said up top….YOU are in charge of your own health and YOU, only YOU must take direct and constructive actions to gain the care you need. Forget the Google machine, social media and even be skeptical of forums like this….. JMHO, YMMV