Hi Rach,

I am still learning about this illness and my body...but I feel like you most days although my heart rate hasn't seemed to be affected, neither has my o2, (that I know of). I'm only on Mestinon right now, but with these symptoms, I feel like I should be looking into something else to have any sort of life. I hope you can get a handle on it soon, I know how terrifying it is to suddenly feel that way.

Jessica

Rach
What you were saying is just how I am exactly, & have been this way since my diagnosis. My onset was severe, & has never been under control.
I am still searching for a doctor to help me with the progression.

Hey Rach,

I am certainly not as bad as you are. Everything I do I have to plan it out carefully. Because of the side effects I get from the mestinon, I take them sparingly. Today I am having what I would call a weak day. After I took a shower I had to rest for 15 minutes before I could comb through my wet hair. I had to sit on the edge of the bed to get dressed. I still don't have my socks on. At that point I took mestinon. 20 minutes later I had to use a comb to wet the parts of my hair that dried already, so I could blow it dry the way I like it. I did a sink full of dishes and had to rest a few times for a couple of minutes before I got through them all. I folded some clothes on the coffee table so I could sit on the couch while doing it. By this time over 3 hours passed since I took the mestinon and I had to take another one. I wasn't up to doing much else, and rested. I will be making dinner soon and will probably need to take another mestinon by then. I have very little energy and walking around the house is slow. If I walk too fast I become winded. I believe I'm having this weak day because Saturday I went out for breakfast and walked quite a bit around the Farmer's Market...something I really enjoy doing, but may have overdone it a bit. I will probably feel much stronger tomorrow...if not I'll just rest most of the day. Hope you have a better day tomorrow.

Hugs,
Pat