Just wanted to get active on this site and tell you all a bit more about msyelf and my short journey so far. I just turned 21 in october and attend college in illinois. On December 5th I got diagnosed with MG, and im sure as you all know, it sucks. It started off by just some weakness in my right arm, but I convinced myself it was a pinched nerve or something minor. As the school year went on, I started to have muscle weakness in both arms, which didnt allow me to preform everyday tasks. That stressed me out a ton, and before I knew it, I couldnt chew foods, make facial expressions, and had alot of problems eating and moving my mouth. My rigght eyelid started to droop a bit, and when I walked short distances or up stairs I was painting like dog. It all really came at me all at once. I freaked out. I went to the school doctor who tested me for MS, possible stroke, lyme disease, and a few other things. All negative. I then got an appointment with a neurologist who did some blood tests, incuding being tested on a whim for MG. He called me two weeks later during finals and told me the test came back positive.
I went into Chicago for a second opinion a week later and my new doctor admitted me that day, and started me on IVIG. I only got it for 3 days because I had severe side effects, on day three and four, so they left the final treatment out. It was a really rough experience. She put me on 30 mg of mestinon 3 times a day, more if needed, and 40mg of steroids every other day.
Last friday, on January 5th, I got my thymus taken out through incicons on my right side. The procedure went good, and I am recovering. My chest is so sore, and I am having breathing problems which Ive read is normal. My body is very weak again, and all I want to do is cry and sleep. I dont know what to do now. I feel so suffocated by the events of the past month. I hate this stupid waiting and guessing game.. when will I need IVIG again? When will my symptons come back? When will the amount of pills im on stop working as well and need to be increased? When will this surgery show signs of improvement? If it even does?
I am doing well, besides the recovering from surgery. I dont have any noticable weakness in my everyday activities, but I can definitely tell when the medications have worn off. And somtimes when im with group of people, or even just a friend or two, I get so tired and I start to lose my smile. If I could sleep all day, I think I could and I would. I dont like this new nomal. This is going to sound so stupid and irrelevant but I dont want to have to care about this. Why can I be like everyone else I am surrounded by and worry about grades in school, boy drama or what party to go to on the weekend?! I am feeling so depressed, and I dont think my parents or friends actually get it. Im sure it will get better with time, and once I figure out a routine for this disease I will be fine, but right now, I just cant seem to stay positive.
Hi, I know it’s normal for diarrhea to be extreme with taking pyridostigmine, but has anyone ever experienced the opposite? My father has had diarrhea since having colon surgery 20 years ago. Recently diagnosed with MG, he now has firmer and less frequent stools. I’m curious if anyone else has experienced anything similar? TIA!
My husband was diagnosed with myasthenia gravis in 2016. He is extremely weak now. Takes 60 mg. Pyro 3 times a day. Trying to get in to see Dr., but can’t get in until middle of August. He was diagnosed also with dementia just after that at Center for Senior health in Akron. After much urging by family Dr. We went to a psychologist and after much testing he said he does not have dementia,...