Family and Friends Respond to Your MG Diagnosis

[Deleted User]

Good afternoon Jodi and friends. Years ago when I told people about my hVing myasthenia gravis they looked at me as though I had two heads. It’s years later snd most people haven’t the slightest about Mg.
I’ve learned that I don’t care about the empty or blank looks. I guess I listed some much when I walked many thought I was drunk.
My support system my wife and friends are there to speak up for me.
Me,
I advocate quite well for myself these days. I’m out of the closet I thought I belonged in.
I have a wife of 50+ years,a daughter,grandchildren kid brother and yes I have me.
Thank you my GOD, i couldn’t ask for more
With mucg gratitude
Stanley Schildkraut

[natalie-rudolph]

I have had MG for 4 yrs and currently have terrible right  eye drooping, I also have occasional  double vision which limits my ability to walk  easily. When I am in a group of more than 3 people or outside in the sun ( I always wear sunglasses) my right  eye droops even more and it’s difficult to focus and participate in a conversation unless I close my eyes. I can no longer drive as of now and have lost my independence, which makes me very sad, my husband drives me everywhere. We recently had a small birthday party for my grandson at our house and my husband was doing all the work. I attempted to help as much as I could but my eye kept closing. No one in my family offered to help and my husband told me to sit and he would do it. I know because I don’t “Look sick” people think I am lazy. I have overheard comments like that on several occasions. I have tried to explain my situation to my family in the past but they don’t seem to understand. I have lost most of my friends because between my eyes and covid I don’t see them much and they stopped calling or inviting me out.  I am on prednisone 20mg daily, mestinon 90 mg 5 x day. I had been on IVIG weekly which I never responded to ( I was on it for 6 mo) and now I recently started vyvgart and hoping I get some relief. I don’t know what else I can do? MG can definitely be an isolating disease. Thank you for listening. Natalie

[diana-l-burgess]

I am having the same problem getting people to understand what disease does and how it effects my ability to perform my daily routine. If they only knew what I’m going through they would understand it. U gave been taking 50 mg nestinon and infusion gammagard once a month now.infusion is my only hope right now.