Hi Kendra,

I really, really hope getting off this drug stops the ILD in its tracks. My understanding is that having a reason for the disease is a good thing because then you know how to turn it off. Sorry to hear about your ct scan results. That must have been some scary news.

To answer your question about my symptoms: I had about a year of very red eyes which ended about 6 months ago. I always have some strange symptom going on though, so it was just one of many odd things. I did have them check it out at the mayo and they said it wasn't due to an infection. I started having dry eyes again, without the redness, a few weeks ago so I was googling away when I saw a reference to Sjogren's and dry eyes and parotid glands. Well, I took notice of that because my parotid glands have been very swollen lately, to the point where it's been visually noticeable. I dug a little further and discovered that Sjogren's can cause ILD which was also interesting given my abnormal diffusion tests. I sort of tucked all that under my belt to think about, and then I got the medical records from my hospital stay and noticed that my sedimentation rate was high. Which is another red flag. (And of course nobody told me about the abnormal lab result). I couldn't get my gp interested in the swollen parotid glands so I booked an appointment with a rheumatologist who has a very good reputation. He usually sees first time patients for two hours and actually sat with me for three if you can believe that. He's a saint! And he knew more about myasthenia gravis than most neurologists I've seen. Anyway, he said he was inclined to think I didn't have Sjogren's because I don't have a dry mouth but he's running the antibody tests which are only positive 70% of the time. So if those come back negative he's going to send me to an ENT.

Anyway, do any of those symptoms sound familiar to you?

Oh, and yes, I have breathing problems on exertion too, but I'm not convinced yet that all that isn't caused by mg. Especially since mine comes and goes.

Hang in there, you've had really discouraging news but you could well have figured this all out on your own!! Good job for keeping your eyes open. Yay!!!

Ally