[Leslie]

Hi all, I’m following this thread with great interest, and I really appreciate the information provided. I’m newly diagnosed at age 57, and I’m striving to keep working for four more years when I may be able to retire. It took 5 years to get diagnosed, and all the while my fatigue, vision problems, and difficulty swallowing continued to get worse. I have lupus (SLE), so at first I attributed my symptoms to that. But when I started having trouble balancing (falling down stairs, off a ladder, running into walls, etc.) I knew it wasn’t the SLE.

But I’ll give you guys a little perspective. SLE causes fatigue; I’ve dealt with it for 20 years. Also brain fog. But MG fatigue is otherworldly. Just OMG I have to sleep now. I don’t know if it’s worse for me because I also have lupus, but it feels different. I’m assuming that it’s a different source, the CNS fatigue, perhaps, that just shuts everything down.

Mestonin has really helped. I’m able to drive home safely at night. But if you all who made it to retirement have any tips for me, I’d sure welcome them.

[Leslie]

After a long day at work, I definitely have problems driving home in the dark with both diplopia and light sensitivity, although the latter is less troublesome than the former.

[Leslie]

I appear to be seronegative, although I haven’t been tested for MuSK yet. Neurologist thinks that testing wouldn’t be helpful. Just diagnosed last month.

Leslie

[Leslie]

I started experiencing symptoms about 5 years ago (trouble focusing on drive home after work and trouble swallowing), but incorrectly attributed them to my SLE. It wasn’t until I started falling down stairs, losing weight, and having severe swallowing problems that I finally saw a neurologist. He diagnosed me right away.

[Leslie]

Thank you for the links, Norm. I’m 56, just diagnosed, and I have had SLE (lupus) for 20 years. I thought lupus fatigue was bad, but this MG fatigue is on a new level. It hasn’t seemed to get much better on pyridostigmine, either, which has been disappointing. I seem to improve slightly with caffeine and sugar, but I’m afraid of gaining weight with the sugar.

I’m grateful to learn that the fatigue is normal (not just me being a wuss). I can retire in 4 years (uncomfortably, but survivable), and I’m just trying to hang on until then.