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.
73 year old male, my left eye went off to the side about a year ago, the doctors were sure I had a stroke, but couldnt find anything. Finally saw an opthamologist who knew the MG when he saw it, and his son who works with him as well. He had only had one patient who had it before about 30 years before, and since he found mine, has had another. My breathing has improved since taking vyvgart infusions, can't say about the prednisone treatments as it drove me completely nuts. Have been getting treatments that worked since September 10, as the pyridostigmine the opthamologist gave me did no good except making me unable to urinate. Had to wear pads, as I could not let it go. Finally improving now, having good days and some not so good. The neuro muscular specialist said it was a side effect of the pyridostigmine. Am learning all about side effects, seems all the meds cause dry eye, and I have a severe case, started about 2 1/2 months after starting prednisone. The doctors don't belive it is caused by my meds, but ask google, they all cause dry eye.
I had the same symptoms for a couple of months after being treated with Gamaked . One day the pain went up to behind my left ear then my head and turned out to be a stroke. The side effects listed on their website mentioned vessels rupturing for unexplained reasons. It was omitted after I complained because they wanted to continue charging for the medication which is extremely expensive
Hi Terri
I don't know your age, I have had the same, but I got MG at age 80, and being a guy
just thought such ackes and pains were due to old age but mine came and went away. My right arm has remained a weak limb for the most part, but I have good days and not-so-good days.
hope you have more good days then bad
take care
geraldHi Gerald; I was diagnosed with MG in March of this year and I just turned 80 in January. I was like you thinking all my issues was due to aging until I had recurring double vision. I am currently taking pyritostigmine and I do think it has helped, although the double vision stopped prior to taking the medication. I am an old school retired nurse and have done a lot of research. I do think I have had it for a long time as I have had minor symptoms that would come and go. The issues never lasted for more than a day or two and then would disappear for weeks or months. The double vision and some drooling is what got the MG investigation started. My biggest problem currently is with my legs, thighs and balance. Getting up from a seated position and going up and down stairs are my current issues. I hope things go well for you! jean
Hello
Thanks for your insight. I was diagnosed with generalized MG a little more than 3 years ago. I was a mess back then, now my symptoms have been moderated not eliminated. My biggest problems now are ocular, continued muscle weakness in legs and neck and intermittent swallowing issues.
I am on: Mestinon, prednisone, weekly IVIG, and every 6 months rituximab. I am also on many other drugs like Mepron, Rx calcium, Rx Magnesium, Rx Nexium, viberzi and more. Last time I counted I had 23 different prescriptions.
