Yes I have what you explained and have these features DesertFlower spoke of. The tingling is regualr for me when I extend myself for visits, come home and sit and it comes on at times very hard. I used to tell the docs that I would get spaghetti legs when I was still trying to walk the 1 mile track at my fav park. That was for me feeling that if I didnt sit down I was gonna colapse.
Resting, being able to go to bed and have my total body support can give me this literal 'aahhhh' in my body at these times. It needs to not hold up any part of me or work as little as possible and REST!
Is anyone familiar with the study on mice with mestinon that showed that mestinon caused them to startle when without they would not. When I was first on mestinon it seemed to be very mildy like that for me tho now it is just the opposite. It puts me to sleep!
Annie59
Quote:
Originally Posted by DesertFlower
I have similar experiences, where my body goes limp suddenly, usually I have 30 seconds to a minute to get to a couch or bed and if I don't make it I end up on the floor. I think it has something to do with an antibody surge like you said because I also feel tingly under my skin during these times, a spreading senstion that moves outward ending in my hands and feet.
If I am feeling generally okay, I am like you and recover in about 30 minutes. If I am experiencing lots of MG symptoms previously, I require a long nap to recover, about 2 to 3 hours.
Almost always this happens after some triggering event. Usually it is stress (99% of the time), but occasionally it is something I eat or smell. It is almost like an allergic reaction and I am allergic to stress. Sometimes a phone ringing triggers this collapse, because the phone startles me.
I've also experienced this by smelling and/or eating cinnamon, which I am extremely allergic to, but in these cases the reaction is a little slower, it takes 5 or 10 minutes before complete collapse.
It is not a fun thing, I've spent way too much time laying on the floor waiting for the weakness to pass.
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