I have never had the celiac antibodies done, but I eliminated gluten from my diet for a trial of about seven weeks. I didn't note any differences when I stopped, or when I started eating it again. I know that's not conclusive. I have no digestive problems, which I also know isn't conclusive. I suppose I should have it done. I get my potassium tested regularly because I'm on HCTZ (to prevent migraines that were consuming my life). It was borderline low at one point, but hasn't been since I started taking care to eat potassium-rich foods every day (at lunch--and my episodes of weakness hit around 5:00 p.m.--as far as I can tell, the episodes are totally independent of what I eat and whether I eat). My blood sugar has always been excellent. But I'll talk to my endo about these things.
What makes you think of LEMS?
I asked my neuro about Hizentra, and he said exactly what I predicted he'd say: "I don't have any experience with that." This is frustrating. He's the myasthenia expert in the area. MG is a neurological disease, but many of the treatments are more in a rheumatologist's area of expertise.
I'm holding out hope for the Imuran because I was on a dose that was way too low for most of the year. When I get my bloodwork for toxicity, the lab measures the size of the red blood cells. Evidently if the Imuran is having an effect, they're supposed to be bigger. Mine weren't as of February--that's when I got my last dose increase. Will see if they are now. And you know what, I am better--when I look at the whole picture--better than I was a year ago, and what could account for that but the Imuran? I bet I would find out I was much worse off of it. I'm fortunate that it doesn't give me any side effects that I know of.
Thanks for taking the time to respond. We appreciate what you do here!
Abby
Quote:
Originally Posted by AnnieB3
Abby, Have you had your celiac antibodies done or a fasting glucose and A1C? They can also do a 24 hour potassium URINE test or other electrolytes. Has your endo checked other things like adrenal function (again, fasting)?
Maybe they could redo the LEMS test.
Imuran should've kicked in by now. At least that's what the experts say. It's supposed to kick in sooner than Cellcept. I know someone with MG who didn't know how well it was working until she went off of it.  She went off anyway due to the side effects.
Don't forget about Hizentra.
While you're deciding what to do, think about your overall quality of life. I know MG sucks but you do have it. Can you really expect to feel like super woman unless you roll the dice and do reboot or stem cell therapy? Even that's not foolproof.
I don't have answers. I'm stuck with Mestinon only and a sort of half life.
Annie |