Annie -

Not sure what TPMT mutation is, but prob not. She didn't do many of the tests because I went downhill so fast and I reacted well to the mestinon and IVIG. Same reason they can't get the difference for LEMS and MG now.

I had a CT for lungs and it's clear. My understanding w LEMS is that it can be cancer not just SCLC. I am kind of worried about the liver right now. Everything else has been reviewed closely in the last two months. My neuro isn't going to let that just go. She will make sure they keep looking, but if nothing is presenting yet...

She said treatment for the two would be the same except treating the underlying cancer if they find it with LEMS. What do you think would be different?

Yes, the antibiotics for pink eye set off the mg. Deffinately. Eye doc confirmed. Not on them now of course...

My neuro didn't know amitriptyline had a mg reaction. It wasn't on the list she was looking at. Yes they tried other stuff for headaches. Sure it's prob from the IVIG treatments. MRI came back ok. I am not taking any pain meds because of the mg. I am coming off the amitriptyline now. I will tell her about the blockers. Your supposed to wean on and off that drug, but I am low enough now I'm just stopping. Good comment on the release of acetylcholine. Did not know that. I would think my neuro should but.... pharmacist didn't know either. I have to tell them all the time on other things. I have been my own advocate. Now my primary care is also watching.

B12 and D were fine. Iron was/is still a MAJOR prob. Really high and percent really high. My white and red blood cells have gone up and down and up and down. It's been weird. Has me worried about lukemia or something. They go bad then doc worries and retest and then they straighten out. Not sure what is going on there.

If it gets worse my hubby will drive me. Done a crisis twice already... thanks for the pointers!

Candi











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