Hi, I'm looking for some help - I do not have a definitive diagnosis of MCAS but will be seeing an immunologist in the new year who has experience with it. I have many of the symptoms noted to be associated with MCAS but with such a myriad of symptoms being possible, I've yet to find any relation (in my research) between cataplexy and MCAS.
My issue is with severe, fairly sudden body muscle weakness and extreme cognitive impairment....much worse than my PEM episodes. Seizure and Addisons disease has been ruled out but I do have POTS and vaso vagal syncope. Usually cataplexy information includes mention of accompanying narcolepsy but I cannot sleep in the day so doubt that I have that. I have alot of other strange symptoms as well.
Episodes resembling anaphylaxis and extreme reactions to bug bites are new to the list but more concerning even than that is that the cataplexy is increasing.Sometimes it is from PEM that progresses in intensity, other times I can be doing nothing in particular ie. watching TV or reading. My entire body just suddenly relaxes and if I don't make it to the couch in time, I'll fall to the ground still conscious but totally unable to respond to queries. (weird b/c as of late, the opposite happens with my feet muscles in bed- they contract so much that my toes get bent out of position).
Does anyone experience or know much about cataplexy episodes? I'd like to know more about this before seeing the specialist in January b/c its possible this has nothing to do with MCAS and I'm barking up the wrong tree.
Charlie
My issue is with severe, fairly sudden body muscle weakness and extreme cognitive impairment....much worse than my PEM episodes. Seizure and Addisons disease has been ruled out but I do have POTS and vaso vagal syncope. Usually cataplexy information includes mention of accompanying narcolepsy but I cannot sleep in the day so doubt that I have that. I have alot of other strange symptoms as well.
Episodes resembling anaphylaxis and extreme reactions to bug bites are new to the list but more concerning even than that is that the cataplexy is increasing.Sometimes it is from PEM that progresses in intensity, other times I can be doing nothing in particular ie. watching TV or reading. My entire body just suddenly relaxes and if I don't make it to the couch in time, I'll fall to the ground still conscious but totally unable to respond to queries. (weird b/c as of late, the opposite happens with my feet muscles in bed- they contract so much that my toes get bent out of position).
Does anyone experience or know much about cataplexy episodes? I'd like to know more about this before seeing the specialist in January b/c its possible this has nothing to do with MCAS and I'm barking up the wrong tree.
Charlie