New to Myasthenia
7 months ago I went to work and had pressure on the left side of my head and in my ear. As I was triaging a patient I felt my lip droop. I thought I was having a stroke. 2 days later while at work my left eye lid started to droop and has been this way ever since then. The mouth went back to normal after a couple of days. I saw my neurologist and he is pretty sure it is Ocular MG But seronegative. I am currently on Mestinon 60mg BID and Since then I have started having severe cluster headaches that turn into migraines. All of my antibodies are negative. I stay fatigued. I have found a migraine medication Qulipta that I take daily and it has minimized the headaches a lot. So confused as to why this happened. I had Covid in Sept. 2021 and it was a bad case. So maybe that’s where this came from. I just don’t know. As long as I take the mestinon the eye will stay open unless I am tired or sick. For the last 2 months my joints are starting to become stiff and hurt, my muscles are sore, the incontinence has started to become bothersome some days but not everyday. It’s nice to find others who are going through the similar things. Very thankful to find this forum.
tried to respond don't know if it went through
So sorry to hear what you are going through but glad you got some mestinon though that frequency is woefully off. Start a mestinon journal of all sx, see if you can take it q4hrs remind prescriber that 60 mg only effective 4 hrs. I have left side head pain too,also post viral, went to PCP who said if want neuro check go to ER! Sleep med listened and affirmed probable trigeminal neuralgia, just watch it. I am triple sero neg, was pos NT5C1a now negative. I have been on this journey 5 yrs, had to stop nursing , driving, writing but gradually reclaiming my life with Pyridostigmine 180mg BID, 15-30mg supplements when physical or emotional demands. It can give you loose stools initially but it fades, again journal, helps with incontinence tremendously. Isn't it fun they don't count that as symptom or important? I wish you well and finding your balance.
cherylthank you. I will start journaling.
Hi
, sorry to hear what you have been experiencing recently, but I'm so glad you found our community. If we can ever help locate any other info or provide a listening ear, please know we are here for you. We are grateful to have you here with us. Kindly, Jessica, MG Team Member
