I have myasthenia gravis

newtomg75, I do wish you weren't alone and had someone to help. Fatigue with this disease can be intense and recovering from pneumonia alone can be exhausting. Don't expect terribly much of yourself.
Have the infusions been at all helpful.
Myasthenia gravis the future is here. https://pmc.ncbi.nlm.nih.gov/articles/PMC12328970/

@gently oh thank you!
The first 2 infusions were wonderful after the second day but I guess because I have been sick this one hasn’t boosted me up yet. I’m hoping tomorrow will be better. Just your response has put a smile on my face.

I have been getting IVIG since last December. It was helping a little. In April my neurologist doubled the dosage. Since then I have been doing much better. I still get tired if I try to do too much but normal daily activities are possible. In January and February I wasn’t able to walk up stairs, now I can.

Today is a new day. I am hoping to do a few stretches when I’m at my strongest which will be soon. I’m so happy a few people have commented about MG . I probably have had MG for a long time and as I look back 20 years or so now I know what was wrong with me. I’m sero-negative too. Yuk !

I was diagnosed with ocular myasthenia gravis four years ago, had my thymus removed, which we hoped would keep it from progressing. Been on prednisone ever since, sometimes as low as 5 mg sometimes up to 20, aided by Mestinon a few times a day.
I'm trying to figure if I've crossed over into full myasthenia gravis as it seems like I get short of breath sometimes when I've done hardly anything. But I always heard that the progression was eyes, swallowing,lungs, and I have no issues swallowing- as evidence by my weight gain. I am still active, I bike, swim and do an exercise program, but get short of breath sometimes just when I walk upstairs. How did your disease progress?

Oh right!
Severe double vision about
2 1/2 years ago but took about 5 more doctors to finally dx with the single fiber EMG as I’m seronegative . But it started with tripping, strange vision episodes, falling down, fell off my bike during a vacation ( 3 times in a week) which was 20 years ago. I didn’t know what was wrong with me . Periodic unexplained problems. Finally a doctor sent me for a single fiber test because the mestinon didn’t help my diplopia but I was more steady on my feet. So it’s been a long journey but I am hoping I will get better with in the next year . The bad thing for me is my personality doesn’t fit with the way I now have to live. I would say oh give me a cup of coffee and I will take a jog and push through. I graduated to going to the gym and coming home for a nap !😴

@newtogmg75f I’m sorry that you’re having so much trouble with fatigue and all that comes with an apartment or house. Are you in need of any assistance with meals or bathing or house cleaning? Explain this to your doctor (or an in-office social worker) and see if they can help you for a short while. Or maybe neighbors or Meals on Wheels or the area agency on Ageing.

@newtogmg75f Are you also on prednisone?
Mestinon on its own, didn't seem to help but with prednisone that does help but I'm still not normal course. I have to remember I'm almost 77 so part of it might be in the age thing. I think staying as active as you can is a great move.
I got an electric bike so that helps when I feel fatigued I just use the pedal assist and catch my breath and I'm able to keep going.

Oh yeah I’m on prednisone 20 mg daily since 10/25. I hate it because of weight gain and puffy face and worry that my osteopenia will progress to osteoporosis. I’m 76 . I am also on cellcept. I just restarted it . I had a terrible time taking it at first.. I was so flat out fatigued I couldn’t take it . My neurologist wanted me to try again and I’ve been on it about 10 days. I may be able to tolerate it this time I hope. It’s just so much “trial and error “ !!!! I never know what a day will bring but I’m happy for being able to connect with others of similar circumstances. I’m not a fan of computers and technology so this is nice right now. Thank you. I’m also trying some new movement exercises. A 15 minute qigong u-tube thing … to try to do something. After having pneumonia, a UTI and a sciatica flare all at the same time I have become so unconditioned !!! MG has become a whole new life challenge.

@newtogmg75f
Was on 20 mg last summer got down to five last winter now I'm back up to 10.
Tried CellCept, but I think it affected my liver and the doctor took me off after seeing blood tests results.
I found on YouTube,free, jenny McClendon/ Jenny Fitstart senior exercise. She is also a licensed pt.
Lots of videos to choose from and she gives you options within them for different levels. Just an option. I like it when weather outside is too hot or wet etc for walking or biking. I can pause it if I get short of breath too!
I will have to look for the QIGONG exercise never heard of it. Sounds interesting