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.
Yes, that has happened to me as well but for a very short period of time (less than a month) According to my anecdotes, those symptoms started for me 3 months after diagnosis Nov 2023 (and after starting Prednisone regiment it lasted just under three weeks and I've no other issues) you'll be ok.....btw, some medications may cause those symptoms and a bit more...I was also dealing with sleep apnea and Acid Reflux and those symptoms just made my MG a bit more unique...but all came under control with meds and 30-40 minute daily walks.....
BTW, I get stronger as the day gets longer....I have all my ADL's and once in a while I experience muscle weakness in the arms and legs but it's usually when I'm increasing or decreasing Prednisone....recently I reduced Pred to 5 but noticed a flare in blurry vision and double vision of words only as I read books or TV and had to return to 15mg and am currently at 12.5/10/12.5 regiment with the goal to decrease to 7.5 permanently.
But yeah, that MG for you 😂 you have to take it day by day! Wishing you well!!!
Hi Josh, it sounds like you’ve been through a lot already and are doing really well managing things. Muscle aches in the neck, shoulders, or jaw can sometimes happen with MG, especially if those muscles are getting fatigued. It’s also possible that some of the stiffness or clicking could be unrelated things, like tension or posture, which can play a part too.
Still, it’s always best to mention any new or changing symptoms to your neurologist to rule out progression or medication side effects. You’re definitely not alone — many MGers experience phases where symptoms shift or fluctuate over time.
Hubby is 68 and developed Ocular MG six months ago..took 3 months for diagnosis and appointments hard to get…now on prednisone which doctor said should help in about a month..ended up in ER month and half ago due to severe balance issue…did your eyes improve so you can drive…he is currently unable to drive…thank you
my MG started about a year and half ago. Mine started as ocular. It was very severe vertical double vision, and a droopy eyelids. It scared the crap out of me! What was strange is it was actually my right eye
If i kept my right eye closed I could see ok. Shortly afterwards I developed weak muscles and couldn't hardly walk. My doctor put me on PT which actually made it worse. I had to learn quickly that I had to go very slow and not do too much at any one time. I also was having very bad vertigo. I could only get around with a.walker. I could not drive anymore, or due woodworking in fear of falling into one and hurt myself. My whole life was turned upside down. I have worked myself into managing my symtoms. Things have slowly gotten better . I've learned how too live with this.
I've had MG since 1999. I had recurrent malignant thymoma. Cancer of the thymus. They tried to get it out through my side. Three months later they said the cancer is back. Lots more chemo followed by a big surgery where they cut my sternum to get all the cancer out. I then started with droopy eyes. Usually one eye but occasionally both eyes at the same time. Had to open my eyes with my fingers to see. Then effected my speech. Very hoarse and slurring. Then my chewing and swallowing. All along my muscles were weak. Over the years I've used Mestinon, plasma phoresis, IVIG, Cell Cept, Solaris and Vyvgart. I have a port for infusions as chemo killed my veins. The port makes everything easier. MG is effected by heat. I've learned to live with it. I had to change my front steps to get in my house.The usual rise on a step is7". I couldn't raise my foot up to come up the steps. I just had new steps installed with only 3" rise. If I'm going anyplace where I have to walk alot I use my scooter. It's all about learning what helps you the most. Good luck and GB.
