Hmmm, it was 8:00 pm when I posted. I thought I had changed the time zone but I guess I didn't. I'm headed back to bed but I'll continue to take the Mestinon to see how I do tomorrow.

I took my morning dose (9:20 am) and it made me extremely tired and weak. After it wore off I felt better. I'm not having a bad day weakness wise so I could notice the difference when it wore off.

I took the second dose at 4:20 pm and the same thing happened. My arm and neck became extremely weak, I couldn't grip with my hands. I tried to rub my dog and my arm wouldn't go all the way up and it's like my hand just fell on her, couldn't grasp her fur because my fingers were weak. The weakness has eased up some but my sister noticed it as well.

I've also noticed that Mestinon makes me feel like I'm drugged up and tired. I'm not sure if I should take the 3rd dose or not. Now I'm concerned that MG might not be the problem which just puts me back at square one all over again.

That's exactly what one would expect if they had plenty of acetylcholine in their body, as "normal" people do! Please call your doc on Monday and let him know that it's not working.

Mestinon isn't a benign drug. If you have enough acetylcholine getting to your muscles and don't have MG, it can cause a Cholinergic Crisis, where you get so weak that you need Atropine or a similar drug to make you better.

It wears off in about 3 hours, so that's the good part.

See my post to you in your other thread. I think you need a better rheumatologist. Your neuro sounds great.

Take it easy!

Annie

Thanks AnnieB3. I'm not going to take any more, a little afraid that I'm going to make myself sick. I'll be calling Monday to see what our next step is. I know that the 14th I have my MRI. Other than that I'm not sure what to do.

Did your doctors tell you exactly what kind of anemia you have? Is it regular old iron deficiency anemia or a different kind? Have they done a peripheral blood smear to LOOK at your cells? Did they do an anemia profile, including total iron binding capacity, ferritin, transferrin saturation, etc.?

I hope you do have your records. Sometimes doctors don't tell you everything and they may "pooh-pooh" what positive results are there. Diseases often don't shout, they sneak up on you slowly! And many doctors don't look for those little clues but the HUGE ones.

Annie

I do have a copy of the medical records and was told iron-deficiency anemia. My doc did an anemia profile.

It sounds like you and your docs have all the answers you need then. I hope you guys can figure out what's going on.

Annie