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.
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
Hey there! I am delighted to welcome you to our community of amazing and supportive individuals with MG. We are happy to have you join us. We are appreciative of you joining the discussion and sharing your tips 😀
Jodi, Team Member
thank you for your advice. I'm super sensitive to the cold but I do enjoy a nice ice pop. I ate about 3 yesterday with my kids. For me, It does help with the muscles relaxing. A great alternative to putting something physically cold on my body.
- Jazmin (MG team member)
I get the jaw aching sometimes but not always, sometimes a swelling of glands in jaw area.
