Hi everyone - I am really struggling now and I'm not even sure if it's something that is even to do with MG - can any of you help me with this even if its just to say - No, it's not really an MG symptom.

At the moment I am struggling, I am on 90mg Mestinon 5 x per day and awaiting my Neuro to come back off holiday to look at doing the SFEMG and talk steroids/immunosuppresants. I have been going downhill for about 4 weeks now and along side my facial weakness and intermittent arm/leg weakness I am having problems with my chest and mainly with standing and sometimes sitting upright. I am deathly pale at the moment and constantly look worn out which I am putting down to my body struggling. When I stand I get a pressure dead on my chest, it feels a real effort to take a full breath and almost like I am stretching my chest muscles and the muscles at the base of my throat (the only time I ever had this before being ill was after blowing up too many balloons, if that helps to describe it at all?!) If I try to keep standing (like if someone stops me to talk or I have to queue) I can get a bit of pins needles in my chest...a bit like the feeling you get before you faint and all the oxygen has gone from your body?? If this happens leaning forward can help or against something but I usually want to lie down and when I do - its such a relief, my little hearts beats like it took all its effort to stay upright and then O rest a little and I can get up again! Sometimes when I'm sitting I even get like this and have to lean against something! It does also sometimes gets better if I can gently move around a little or shift my weight from one foot to the other rather than staying still?!

Is this MG??? I don't feel like my muscles are fatiguing or struggling to hold me up like I know some of you unfortunately get...unless this points to my chest muscles fatiguing?? This is driving me mad, I haven't been able to work for a couple of weeks, I'm scared to go to the shop in case I have to queue, or pick my daughters from school as I don't know how long I can stand for and I'm really scared to drive my daughters anywhere! I just can't trust my body to behave!

Can anyone help me understand what this is or if I should be looking for another cause outside of MG??

Thanks everyone x