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.
I hear so much about droopy eyelids but has anyone have back pain and it feels like the muscles in the lower back are not strong enough to hold my body up.straight so my body leans or curves to the.right when I walk. Funny as it seems if I were to carry a heavy bag on my left shoulder it helps my body to be.a little more up right. I find that when going to grocery stores using the shopping carts to hold me up straight, I can walk without my body leaning. Does anyone else have this problem?
Eric KayaHi Eric! Thank you for sharing your experience. While pain is not always considered a symptom, many people with MG experience it.
This shares some of the connections between MG and pain: https://myasthenia-gravis.com/clinical/pain
Talk to your doctor about ways you can strengthen those muscles and/or safely eliminate the pain. I hope some of our members will comment and share their experiences as well 😀
Warmly, Chelley (Team Member)
Thank you so much for responding
I was diagnosed with MG 20 years ago because of double vision. I started out with a prism in one lens & now have them in both lens! I had my thymus taken out & helped my muscles but I couldn’t take any of the meds to help it. I just live with it & muscle weakness. I have noticed my left eye extremely sensitive to lights & daylight to the point that it blinds me. I had to give up driving for fear of an accident. Eye specialists just say it’s because if my blue eyes!🙄. I was wondering if anyone else has experienced this?????
you are not alone in experiencing sensitivity to light. Others in the community understand how challenging and frustrating this symptom can be. One of our patient leaders shared her experience https://myasthenia-gravis.com/living/photophobia-experience. I’m sorry you’re having to deal with this🩷. Please reach out if we can help in any way. All my best, Julie (team member)
I had a thymoma removed however they couldn’t remove the entire tumor due to its location. My thymus was also removed at that time. 2 years later double vision occurred. When it happened I suspected mg. I was fortunate to see a neurologist who specializes in mg and was prescribed mestinon which has stopped my double vision. Other than being more tired I am doing well and exercise on a regular basis to keep as fit as possible.
I’ve been dealing with intermittent double vision for the past two years. After multiple doctor visits, MRIs, and CT scans, I finally saw an ophthalmologist who ordered a blood test—this confirmed his suspicion of myasthenia gravis. The symptoms come and go, but a short course of Prednisone usually improves things for me within four or five days.
Before I tried Prednisone, I used a temporary Fresnel prism patch for a few weeks to confirm the correct prescription for the double vision. It worked well, so they made me a permanent prism lens for one eye, and it has helped a lot whenever the double vision returns—like it is right now.
After a seven-month wait, I finally have an appointment with a neurologist on Monday, and I’m really hoping to get some clearer answers.
