Without getting into the weeds, my wife had an event that initially was thought to be tied to her thyroid condition. After 6 months of “fooling around” with incompetent care and diagnosis in the Tampa area, we said enough and I started the process to reopen our Mayo Jax relationship (was our primary care source for many years when we lived in Jax). Long story short, we sent 200 pages of records and all imaging to JAX Opthal. Dept. and was promptly scheduled for an appt. with Dr. Eric Eggenberger. Initial visit was extensive and thorough with an extended visit with Dr. Eggenberger and the a quick referral to endo as well as other testing. There was no doubt Dr. Eggenberger had already concluded OMG from the records and process of elimination. He then ordered the standard battery of MG/OMG tests, blood test came back “sero negative”. Further imaging as well as an EMG was ordered and the news was in, OMG. That was 3 years ago. There are not words to describe our confidence in Dr. Eggenberger, his team and other involved departments and physicians. He is cautious, conservative but direct and confident in his approach, involving rational patients in the process….yes, a slow process. After dealing with other ophthalmologists and neuro-ophthalmologists, he is clearly a one of a kind expert in dealing with OMG.
I have no doubt MN and AZ clinics have the same level of skill. I will be clear, preparation (med records, imaging, self tracked logs and history, etc) , ability to clearly communicate (without emotions and drama), willing to cooperate and coordinate patiently and manage your expectations will help your cause and ultimate outcome…..
Wow, it sounds like Mayo did a great job with you
Interesting that you are on Mestinon Without prednisone and have had success. I do 60 mg of mestinon every four hours, but also once a day 15 mg of prednisone. I assumed it was the prednisone that helped me get osteoporosis.
The droopy eyelid went away as soon as I started taking the prednisone now the issue is double vision which the mestinon helps. Thanks for all your info wishing you continued success and controlling this crazy disease.
Well again thanks for the info I reduced my prednisone to 10 mg a day and next week plan to try 7.5. I would love it if I could get off entirely like you! Per the doctor I have to do it slowly but now I'm wondering about trying the increased dosage of mestinon.
Meanwhile, I have thin skin, some hair loss, and tinnitus and tinnitus the higher dosage of preon for several months
That is wonderful and I am currently doing 10 mg of prednisone plus my 60 mg Mestinon two times a day hoping I can work my way to doing what you doing
The higher level of prednisone I was on for a while, apparently cause some issues. In addition to the osteoporosis. I have thinning skin, some hair loss, and no tinnitus
Thanks for the info
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!
Six months update after going to mayo, I am posting to relay some success.
I have stabilized at 90mg Pyridostigmine (4 x a day) for the MG along with 10mg of Glycopyrrolate (3x a day) to fight diarrhea. This combo has produced fantastic results for my droopy eyelid caused by the Occular Myasthenia Gravis. And, I am still taking Cellcept (1000mg 2X a day) that was prescribed a few years prior, to fight Cicatricial Pempagoid. Dr Madigan Mayo Neurologist said the combination of Celcept and pyridostigmine might be helpful together and was pretty sure pyridostigmine would help me. Bottom line… the success of my lifted eye lid vs the intermittent diarrhea is a big win. It is working! Thank you Mayo Clinic and my doctors. Mainly Dr Deena Tajfirouz and Dr Nicholas Madigan.
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?
Hi Colleen. When I first posted you helped out with tagging or broadening my potential reach. Does that happen automatically now if I post? I am nit exactly sure how to navigate within Mayo Connect. I posted a follow up to my condition this AM about my visit to Mayo six months ago
Thanks
Bill
Connect
Connect
Like
Helpful
Hug
Without getting into the weeds, my wife had an event that initially was thought to be tied to her thyroid condition. After 6 months of “fooling around” with incompetent care and diagnosis in the Tampa area, we said enough and I started the process to reopen our Mayo Jax relationship (was our primary care source for many years when we lived in Jax). Long story short, we sent 200 pages of records and all imaging to JAX Opthal. Dept. and was promptly scheduled for an appt. with Dr. Eric Eggenberger. Initial visit was extensive and thorough with an extended visit with Dr. Eggenberger and the a quick referral to endo as well as other testing. There was no doubt Dr. Eggenberger had already concluded OMG from the records and process of elimination. He then ordered the standard battery of MG/OMG tests, blood test came back “sero negative”. Further imaging as well as an EMG was ordered and the news was in, OMG. That was 3 years ago. There are not words to describe our confidence in Dr. Eggenberger, his team and other involved departments and physicians. He is cautious, conservative but direct and confident in his approach, involving rational patients in the process….yes, a slow process. After dealing with other ophthalmologists and neuro-ophthalmologists, he is clearly a one of a kind expert in dealing with OMG.
I have no doubt MN and AZ clinics have the same level of skill. I will be clear, preparation (med records, imaging, self tracked logs and history, etc) , ability to clearly communicate (without emotions and drama), willing to cooperate and coordinate patiently and manage your expectations will help your cause and ultimate outcome…..
-
Like -
Helpful -
Hug
1 ReactionThanks flrvingbob ! I agree Mayo is the way to go. The treatment I got in MN was the best.
Hi MichiganJan. Just an update The Pyridostigmine 90 mg every 4 hours is working for me. It’s been 6 weeks.
Well again thanks for the info I reduced my prednisone to 10 mg a day and next week plan to try 7.5. I would love it if I could get off entirely like you! Per the doctor I have to do it slowly but now I'm wondering about trying the increased dosage of mestinon.
Meanwhile, I have thin skin, some hair loss, and tinnitus and tinnitus the higher dosage of preon for several months
That is wonderful and I am currently doing 10 mg of prednisone plus my 60 mg Mestinon two times a day hoping I can work my way to doing what you doing
The higher level of prednisone I was on for a while, apparently cause some issues. In addition to the osteoporosis. I have thinning skin, some hair loss, and no tinnitus
Thanks for the info
Six months update after going to mayo, I am posting to relay some success.
I have stabilized at 90mg Pyridostigmine (4 x a day) for the MG along with 10mg of Glycopyrrolate (3x a day) to fight diarrhea. This combo has produced fantastic results for my droopy eyelid caused by the Occular Myasthenia Gravis. And, I am still taking Cellcept (1000mg 2X a day) that was prescribed a few years prior, to fight Cicatricial Pempagoid. Dr Madigan Mayo Neurologist said the combination of Celcept and pyridostigmine might be helpful together and was pretty sure pyridostigmine would help me. Bottom line… the success of my lifted eye lid vs the intermittent diarrhea is a big win. It is working! Thank you Mayo Clinic and my doctors. Mainly Dr Deena Tajfirouz and Dr Nicholas Madigan.
Hi Colleen. When I first posted you helped out with tagging or broadening my potential reach. Does that happen automatically now if I post? I am nit exactly sure how to navigate within Mayo Connect. I posted a follow up to my condition this AM about my visit to Mayo six months ago
Thanks
Bill