Lily my heart goes out to you so much , you talking about using a cart to keep you steady , I remember when MG first hit me like that ,I was so frightened ,I told my husband he said that's terrible ,isn't there something I can do about it, I just looked at him like are you for real? He cares but doesn't understand and I have no other family there all gone , so its one day at a time and pray for remmison❤

Thank you both! Still trying to figure out how this platform works. Haha. I’m feeling better this evening. I think it was nice to be out even if it was just to my psychologist. First meeting. And I love her! I felt so seen and heard. So feeling hopeful. It rained. So it cooled off a bit. I hope my AC finally arrives tomorrow !

I also killed time at a grocery store to cool off and wait til the sun went down a bit so it would be cooler in my house. I found leaning on the shopping cart helped keep me steady so I didn’t have to use my cane.

It’s nice to go into a shop and see things as opposed to just online shopping all
The time !

I took my time walking home as felt shaky and weak. Didn’t care anymore if people saw me as just a person with a cane. So that helped calm my overwhelmed nerves. It helps keep me steady and people are more patient with a cane. And not trying to run me over.

My friend suggested I get a scooter but with the uneven cobblestone streets and sidewalks here, it’s not ideal. Plus I don’t always have the arm strength to operate a machine.

It is what it is. But of course I still
Hide my face in a big sun hat! 👒

I will get used to this. I hope ! I still pray for remission.

I met a woman on instagram and she runs. She just got married. So I’m hopeful.

That’s it for now. Adrenaline is wearing off and crashing!

Hi Lily , I only have Ocular MG so far but sometimes my neck and shoulders hurts ,I can't focus my balance is way off , I can't do most of the things I enjoyed I'm on Mestinon it opens my right eye but it doesn't get rid of !y double vision , I went to a,NeurOmologist and was fitted with prisoms that work great , so I got the tuff stuff taking care of , my Neurologist wants me to try prednisone but I sad no , I had a lot of side effects from the mestinon and that was enough besides I've read there are some nasty ones from long term prednisone , I just have learned to live with what I got left and pray for a cure or total remission, as far as income I 'm retired and collect social security, I do most of my things in the mornings that's my best part of the day , then take one day at a time❤

Hello Lily! I sympathize with you! I also have severe seronegative MG that is in exacerbation. We have yet to find a treatment that works without severe reactions. I was working from home as a virtual college instructor. Following my diagnosis at the end of 2024, I took medical leave from work. I returned with extensive ADA (Americans with Disability Act) accommodations. Not sure what the laws are in your country, but there should hopefully be disability accommodations available to you. I am once again on medical leave as my symptoms are just too severe to continue working even virtually with flexilble schedule. Hoping to begin Rituxan treatments this summer and return to work in Fall (or Spring at latest). Wishing you well!