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.
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.
I've run the gamut of meds and procedures since 2017 when it really pulled the rug from under me. At first it was Ocular, then inability to swallow, speak or breath correctly. Now it works quite a few muscle groups but my ocular and breathing is the most prevalent. Pyridostigmine (mistinon) is my main med in quite a healthy daily doseage ( slow release 180 mg twice daily and regular 60 mg 6 times daily) as well as IVIG infusions every 4 weeks. Talk to your neurologist of progressive symptoms as mine has now affected many different places. Yes it will progress.
I've been coping with mg for over a year and a half now. The symptoms I'm mostly having is paranoia. I'm almost always second guessing myself. I feel frozen afraid to.make any moves.
My neurologist has me on monthly 3.5 hr. Infusions, mestinon, prednisone. I'm looking in the mirror at a different person. And asking God: why me? In one out of a million! I don't know if any one will read this, or it goes.into the dead file. But it's real man.
My doctors say I look good, but feeling good is a whole nother ball game.
I was diagnosed with MG at age 57. It started with double vision with occasional weakness in my legs where I feel like I’m going to collapse. Recently I lost consciousness for 2 days. A useless roommate I had waited 2 days before finally calling an ambulance. I had sepsis and was in the hospital for 10 days. The whole time I was in the hospital, I had a catheter in. When they removed it, I couldn’t pee on my own. I was released on day 10 still with a catheter in. I got an immediate appointment with a urologist. I’ve had a test done called Urodynamics and a cystoscope scheduled for late September. I had an appointment with a Nurse Practitioner to check how I am doing. I asked about the results of the test and she said it showed my bladder muscles were not working properly and am scared to death that I may be on a catheter for life. When first diagnosed with MG, I felt sick on the Pyridostigm and felt better without it. I got to thinking that my urinary problem may have something to do with the MG. So I just googled it and found out that yes it could. I made an appointment in May for a MG specialist (this was prior to my current problem) and soonest available was October. I had no choice but to take it. I am going to bring this up with the urologist but am curious if anyone else has had urinary retention to the point of having a catheter. I am going to try the pyridostigm again but won’t know if it helps until the catheter can come out for the cystoscope.such a horrible condition…hubby has had it 6 months…ocular mainly…
