Hi MG'ers and Mystery Diagnosees. I hope you are doing well. bny806, I have read your message a few times and have so many questions for you!

I wanted to update everyone on my Neuro appointment. After my Neuro spoke with my Pulmo, she started asking me if I had inhaled anything, had any history of inhaling anything. And then I remembered that they're doing construction across the street (to a school) and they keep using tar a couple of times a week that gives me awful migraines. This started a few weeks before my symptoms started up again (prior to Thanksgiving) and it seems like a really interesting coincidence. So maybe?

Anyway, I get another EMG and a Phrenic Nerve test tomorrow. I get an EEG on Thursday (I'm staring all the time and I've never had one). I see the Neuro again on the 26th and I will likely start Steroids then. She didn't seem entirely sure it would help, but she said she had to rule things out before trying other treatments. So I'm totally open to it and I'm glad she's finally going to try something. Has anyone had positive experiences with Steroids? I'm actually fairly nervous about being on them, but I'm not going to turn a treatment down.

What she did say was that she absolutely does not know at this time if it's autoimmune based or inflammatory based. What she's most focused on right now is figuring on if it's affecting my motor nerves or my muscles. She said in females my age (I'm 30), this does tend to happen, where it's so hard to figure out and diagnose.

I am going to see a GI doc. I have lost 5.5 more pounds in the last 3 weeks, so I need to figure out how to at least hold onto the weight that I have at this point (bny806 - perhaps this could be a malabsorption issue like yours?) . She did not do the Tensilon test, but she did do blood tests for MG again. So anyway, it felt really informative and I'm optimistic that we're finally getting somewhere. I just need to stop losing weight and gaining new symptoms.

I hope each of you are doing well. I wish you all the best.

Hankster1