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.
Stupid MG! I started out with not being able to open my eyes, then it went to double vision, and I am about 50/50 vision right now. I've had something weird lately and am wondering if it has anything to do with MG. I am INCREDIBLY sore ALL over, but both knees, neck and back are the worse at present. I would like to go back on Cellcept I think. God bless you and feel better, ok?
Shortly after I was diagnosed with MG I came down with Polymyalgia Rheumatica. Polymyalgia is a symmetrical disease meaning it attacks the same part of your body both sides. Mine manifested in my shoulders, wrists, hands, neck and hips. It is very painful. Just be aware, but if only one side of your body hurts it’s not Polymyalgia.
What does it feel like? Polymyalgia is a very bad burning in your muscles. If you literally don't move, the pain will subside somewhat, once you move the muscles you will know it. My worst pain was in my hands and wrists followed by my shoulders. It was bad enough that I ended up in the hospital, it very painful and miserable. However, there is an easy fix. There is no definitive test for Polymyalgia. If you have the symptoms, they will put you on Prednisone, usually starting at 20 mg. per day. If in two days the pain goes away, it was Polymyalgia. You will stay on Prednisone for appx. one year as you taper off. You will need a rheumatologist as they treat this. It was right after I started CellCept and Pyrodigistimine for my MG, so my initial thoughts was a reaction to the drugs. I wouldn't wish Polymyalgia on anyone.
I was diagnosed with ocular MG probably 20 to 25 years ago. Have been on Cell-Cept, (Mycophenolate mofetil) 1000 MG 2X daily since the beginning. I have outlived my Neurologist now . . . his health was so bad he was forced to retire, so I am looking for a new Neurologist. All I need, at this point, is someone to renew my medicine presciption, otherwise I am, at 86 pretty stable.
So, I'm a diagnoses gMG type IIb, not an Ocular MG, which this thread seems to be about....
When I drop into an exacerbation period I get weird diaphragm issues. I will suffer from positional breathing difficulties, if I lay on my back or kick back in a recliner, my diaphragm turns off and I stop breathing. It gets scary as it acts like a light switch is turned off. It impeded my initial diagnosis as I got routed thru a cardiologist/pulmonologist/ent as it seemed like I had Orthopnea instead of gMG. I also will suffer thru diaphragm overloading events as sneezing/coughing/gagging/belching will trigger a 10-30 second long breathing cessation event.
I'm currently in a medically stable state & I know the med dosage path to adopt when I flare, but I have to say, I hate MG.Hang in there. Do you have a CPAP or BIPAP? I am currently on a BIPAP and will not sleep without one, it helps. Something as a simple head cold can set my MG off messing with my diaphragm/breathing also. I recently had e-coli UT infection and talk about making my MG flare!
