Can’t say if I am still in denial after two meetings with my neuro since I got all these symptoms of MG. But worst of all is I can’t figure out what to do after. I had been at first given just 15mg of prednisone and once a day of 60 mg of mestinon, then went into 30 mg of prednisone and 4 tabs a day of the mestinon... making me feel like suicidal with my liver as I am taking another med for my thyroid as both went bigbang on me last September 2016. I have this crazy DV that makes everything spin around me and looking into my eyes in the mirror, my eyes looked like lazy eyes(pupils not aligned)! It brings out that depressing mood I had conquered before after a MVA accident in 2013 and it doesn’t help at all that I had to go through different emotions everytime it hits me. Plus the fact that I have a six year old son and a 16 months old baby to look after while I am so in need of awful lot of rest.
I tried to search the web for anything to help me go through it and I came across this site. I want to know is there really a light after this dark tunnel? I set aside last September my Continuing Education as I was so weak to even think of getting to school. My husband was so sure I could get back into my feet again this February for my plans for school and yet I still have this DV, funny feeling of twitching muscles around my eyelids and other parts of my face, and splitting headache on one side and a one time occasion of “drowning”,(I can’t breathe). It made me think a lot, do I really have to be like this with MG?
My class will start this coming tuesday and I couldn’t quite decide if I should do it or no..?? But what happens after? Even working won’t be a part of the plan either as I can’t even have the energy to do normal house work. Putting in the question too of my husband being alone to carry all the financial issues for us as we are just regular income(making us low income family) now that I am like this.
Please tell me, is there a way out of this? Or should I say, will I still have a future even though I am mentally exhausted and weak to even face the day??
hey mg community, For the past two months I’ve been treated for mg, I’m currently taking 20 mg of prednisone a day. It’s not helping, I’ve had no symptom reduction and no increase in energy. My specialist wants to taper my dose down, does anyone know where things are heading? Are they going to increase my dose or?
This looks like a very promising treatment. Says they plan to launch is US in 2021. Hopeful that something that’s not immune suppressant will make it to the market. https://www.argenx.com/en-GB/news-internal/argenx-announces-pipeline-expansion-and-argenx-2021-vision-to-build-integrated-immunology-company-at-2019-rd-day/30222/