My MG

By Pep1687

Last Updated:

1 min read

After reading all of your stories about MG, I am glad not to be the only one with this.

I was diagnosed in April 2019 with a pretty bad case of it. Not knowing why one day I could talk and breathe but the next day I could not.

After being put on medicine to control this, I was doing good until two weeks ago. I had what they call a Myasthenia crisis and ended up in the hospital.

I am now on Cellcept along with Mestinon and Prednisone. I also had to have a drip of IVIG. I thank everyone for sharing your stories, as it puts my mind more at ease knowing I'm not going crazy.

Share my own story

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Deborah Vick Member

You are not alone in your experiences. MG can be very challenging as its like a rollercoaster ride, one minute your up and the next you are taking a deep dive. So much relates to pacing ourselves, which is something I definitely still struggle with. - That being said, as we get to know our bodies a little bit better it can help us plan accordingly. - Definitely sending you healing vibes…. Team member Deborah
Pep1687 Member

I have. I have only done IVIG once. My symptoms seem to be under control for the most part.
Mandy Member

I am glad that you are doing better I have been on IVIG for 2 years and it has worked good for me . I am wondering whats the longest anyone has been on IVIG and if anyone developed resistance to its beneficial effects 
1. Arpikurdoghlian Member
 
 <inline-mention username="Mandy" user-id="4518761"/> I am now 53 years old. I got diagnosed with Thymoma in Dec 2020. Had surgery in February 2021. After surgery, in April 2021 I started slurry speech and difficulty swallowing and after 2 visits to ER I got diagnosed with MG. It was MG crisis. I did not respond to mestinon nor prednisone. My neurologist started IVIG in July 2021 every 4 weeks for 2 days in a row, in addition to prednisone 20 mg. We then tapered it down until January 2022 I was off of prednisone and wanted to return to work as Radiology technologist. My workplace mandated the booster. I took the booster, went to work and 6 weeks after I had exacerbation of MG in March 2022. I am back on Prednisone and IVIG every 3 weeks for 2 days in a row. I am not sure how r u many years I will be on this treatment which I am benefiting from. It makes me feel tired for few days though.
Mallory San Nicolas Member

MG can definitely be an isolating disease and diagnosis so when you find others going through the same thing, it is so reassuring. I’m so sorry to hear you had an MG crisis. Those are terrifying. I’m curious to know how the IVIG is helping as well? For me, IVIG was a saving grace! I never thought I’d get better and then my doctor prescribed that and it helped so much. I’m hoping you find something to give you relief from symptoms and help you feel a little more like yourself before you had MG. - Mallory San Nicolas (Myasthenia-Gravis.com Team Member)
Gaylee111 Member

I agree with you this site is wonderful I think we find more info than drs!
1. Gaylee111 Member
 
 <inline-mention username="Gaylee111" user-id="4556168"/> fyi I was told that the IVIG cancer can be one of the side effect and since I had colon and thymona cancer 13 yrs ago dr would not give me that only 10 plasma aphersis didn’t help Me at all just be aware
Jodi Enders Member

<inline-mention username="Pep1687" user-id="4579636"/> I am so glad our community has brought you validation and comfort, knowing you're not alone! Have you noticed any immediate improvement with the IVIG? - Jodi, Team Member