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.

I’m recently diagnosed with Myasthenia Gravis about a year and a half ago.
My issues started with my left eye drooping. My first thought was I was having a stroke. Went to my neurologist ( already seeing him for migraines) and he took blood tests which confirmed MG.
Well if it had just been the eye drooping I would have gotten through it. But when we discussed all the things that could happen with MG, I started freaking out. Weakness in limbs, trouble swallowing, weakness chewing and the worst trouble breathing!
My eye drooping has seemed to go away but now my symptoms are sometimes blurred vision, weakness in my right hand, trouble chewing and pursing my lips and now the new thing seems to be jerky intake of breath. Leading me to go crazy wondering if this is the start of having trouble with breathing.
The jerky intake of breathing has been going on for about a month but getting worse.
As for treatment, until now I have had any really bad symptoms I couldn’t live with. But I’m wondering what I’m in store for.
I hate pills that will only get you new side effects. I wanted to try and find something natural I could take but there doesn’t seem to be anything.
There are days I feel like if it doesn’t get any worse than this I could handle it. But now with this new twist of the jerky intake of breath ( need to see my doctor about this) I’m worrying it may be the start of breathing issues.
Does anyone else have this breathing issue? Not to mention I’m forever worrying that I will one day have a day where I can’t breath and have to be out on a respirator. I know worrying about it isn’t helping but what do others do about this fear?
And I do agree that this MG crsp is a monster. A monster that started off slow and seems to be growing. Also has anyone found any natural things to make their MG better?