Unusual MG Symptoms?
Hi MGers, hope your all coping ok. I was diagnosed with MG 2 years ago after waking up with double vision (which I still have). I had an almost cancerous thymoma removed robotically a year and a half ago. I have been lucky to date that I have had no other symptoms but just recently I have shoulder/neck aching and neck clicking when I turn it. Also have aching pectoral muscles/arms and jaw that comes and goes. Anyone else experienced this? I am of course hoping that it doesn't get worse as I am 2 years in to diagnoses. Any reassurance would be greatly appreciated. Thanks in advance.
Hello, I was diagnosed with Mg in 2024. I didn't realize what was happening to me, until I got to work, and went on a job, I'm an engineer at Southland mall in Taylor,MI. I got a call to repair a door at one of the entrances to the mall. Something I've done for my 40+ years there! When suddenly I was afraid to get on a ladder. And I was only 2 rungs up. Then my wife noticed that my eyelids were closing by themselves. And my speech started getting slurred. That's when I went to a Nurolgist. I had the classic symptoms of Mg. Everything just started getting hard for me to do.
how have you been managing lately? Were you able to find a treatment regimen that helped manage your symptoms? Best wishes, Julie (team member) Thanks Julie! The meds are working. I'm finding it's better to stay busy and be active. The medicine regimen is alot. My neurologist has me weening off the prednisone.
Curious, what’s “almost cancerous”
I have a weird flushing that grows up my body with chills and nausea. Is anyone else having this? It's incredibly unpleasant.
I have had this for years. It seems between 4 and 6pm almost every afternoon I am flushed and sometimes I run a low level fever of 99 to 100. When I am like this eating makes me sick, and we generally try to eat after it goes away. Sometimes it will last till 10pm
I really can't complain. I was diagnosed in early '22 and had quite a bumpy ride for the first couple of years but have been pretty satisfactory since I started on Mycophenolate a little over a year ago. My symptoms were initially optical with pronounced ptosis and erratic/episodic diplopia. Like a lot of people with ptosis I was immediately tested for stroke and then referred to a neurologist. I also had initially problems with chewing and pocketing of food, but my initial neurology resident dismissed that. I was put on mestinon and prednisone which helped but I was still having occasional flares that impacted my ability to do things I previously could. I found a new neuro-muscular specialist and finally weaned from predisone after almost two years but had the problem with pocketing and some slurring of speech and was put on Mycophenolate which has worked phenomenally so far.
have you experienced any side effects with Mycophenolate?
