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.
Fatigue, mornings are the worse, takes me two hours to get ready for work, because I have to keep taking breaks.
Thank you for sharing your experience! Myasthenia Gravis (MG) truly is known as a “snowflake disease” because, like snowflakes, no two of us experience it in exactly the same way. Each person’s journey is unique, shaped by their specific symptoms and underlying conditions. Personally, I deal with significant shoulder and neck issues that are also influenced by other underlying conditions. The weakened muscles can lead to subluxations and other challenges, especially in these larger joints, making it tough to manage.
To help stabilize, I often use a neck brace during certain activities, like working on the computer or creating artwork. This provides support and helps prevent strain. I also find that using gentle shoulder straps allows me to sit with better alignment, reducing the effort required to engage my muscles. These adjustments make a world of difference in maintaining comfort and reducing strain.
❄️ With care, team member Deborah ❄️
I am not dx but have a positive binding result per Mayo standards, and as of today have an appt with an MG neuro finally all the way out in February 🙁 . I have often experienced aching arms and/or legs, mostly when the weather warms up in the spring and through the summer. I found that taking NAC takes it away, btw (N-acetyl cysteine - also used to help some with weakness but not much anymore). I have no idea if this aching when temps/body temp are warm is typical or common. This summer it was less frequent than past summers, but I added other symptoms to take its place.
One of the new symptoms among others of late and that is my forehead muscles above the brows feel tired and worn out/weak. Anyone else?since most pain and weakness is from the muscles and nerves finding a way to get things as cold as possible will help try takeing an ice bath or cold shower or swimming in a cold pool can help also if you have any problems with swallowing or jaw getting sore while eating you could try eating something cold that goes down easy like some icecream or icey poles
, Cold, sets me off, I can't stand to be cold. What's cold to me 72 and below. I get the chills at 68 and that could trigger a crisis for me. Why don't people understand? My wife wants to go to the Mountains for Christmas and I don't want to let her down. at times I can't swallow fluids, my stomach cramps for up to 48 hours. This lasts for up to 8 days. I mash and freeze mango, applesauce, banana, etc and suck very small pieces (coin size) at a time. It helps a lot.
