Myasthenia Gravis: A debilitating MONSTER

I have not been diagnosed with MG but am curious because of some new symptoms I am experiencing. How were you initially diagnosed? Do you have problems with your eyes? My eyes have been going out of focus several times a day and my eye dr has noticed my eyelids drooping recently. I will be seeing my rheumatologist soon and will ask him questions. I hope you have a healthy, happy New Year.

I was diagnosed with OMG (ocular) because I suddenly developed double vision. Wearing prism glasses cured eye problems in a couple days and I could quit wearing them. I’m now being monitored to make sure it doesn’t generalize.

Hi @ladysullivan22 , you might be interested in joining these related discussions that were started years ago and remain active as well:

– Myasthenia gravis; Making an informed decision for my Treatment Path: https://connect.mayoclinic.org/discussion/mg-trestment-path/ –
– Myasthenia Gravis: Share your treatment journey: https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/

In those discussions, members like @diane50 and @lucylulu5280 recently shared their MG experiences with some management tips. Other than the IVIG, what other treatment options have you tried in your time with MG @ladysullivan22?

Thank you for your response! I'm doing the IVIG every 3 weeks - 2 bottles/ day for 2 days of therapy. Also on CellCept. I'm 80 yrs old and this is HARD! I'm so fatigued and out of breath that it's hard to keep up toothbrushing, hygiene, walking and fixing a meal. I'm trying to remain positive but it's hard...

Thank you for your reply. I do respond to the IVIG and my symptoms lessen but don't leave. Also on CellCept at the maximum dosage per day. At 80, I don't think I'll ever be symptomless again. I also have Sjögren's Syndrome which contributes to chronic dryness everywhere! Eyes, skin, Vaginal... Wish I could be more helpful. I've had MG for 47 yrs. First episode at 33 yrs of age. Progressively downward for 47 yrs w/short periods of stability. I would recommend a GOOD Neurologist who might have a sub-specialty in chronic Autoimmune Diseases. Your Rheumatologist can work along on your team.

I'm not familiar with the eye affects of MG but I do have chronically blurred vision from you time to time. Mostly the left eye. I have Generalized MG & it's affected me everywhere. I have an excellent Neurologist & looking for a good Rheumatologist. Other than the IVIG every 3 weeks, I'm on CellCept. Wishing you the best!

I've been diagnosed with SERO-NEGATIVE MG.
Its diagnosis requires the presence of weakness with fatigability, determination of positive anti-MuSK antibodies and alterations in neurophysiological testing of the neuromuscular junction. It is usually more serious and has a poorer prognosis than the seropositive forms, develops in an acute or subacute manner, and the neurological deficit predominates in the facial, bulbar and respiratory muscles.