Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi everyone. I have seronegative myasthenia gravis. I have had symptoms for a little over a year now and I have been officially diagnosed less than a year (may of this year).. I take mestonin 60mgX5 daily. I also take prednisone 20mgX2 daily. I also receive IVIG every 6 weeks. I also have hypertension/pesudotumor in my brain, so I take medication for that as well.. I'm writing this today to get advice, and maybe someone else's opinion. I have a really hard time listening to my body. I have always just "found the strength to carry on" as I have a 2 year old autistic daughter that needs my love and attention 24/7. Man that little girl is my world. She can make anyone smile :). Anyway. I live in the middle of nowhere. The closest hositpal is an hour away from me. My neurologist is 3 hours from me. I see a neurologist here at home, but I wouldn't say he knows as much as the one 3 hours away from me. I see him just in case something happens, then at least someone has some knowledge of my medical history. For the past two weeks or so, I have been having a hard time swallowing. I have talked to my neurologist (the one 3 hours away from me) and all he can tell is that if I think I need to go to the ER then go. Yesterday, I cleaned my church as I do every Saturday. Today, I was being rushed around as I was late to church and my chest started to feel uncomfortable and I became out of breath easily( I have had this issue before and my neurologist knows about it. I have also had PFT and heart scans to make sure everything was okay), my swallowing seemed to get worse and my neck got weak. I just shrugged it off and continued my day. I took a small nap with my daughter ( I don't get much sleep) and when I woke up, I can tell something is off. I can't explain it really. Like I said, im not good at listening to my body and I don't want to burden anyone if I decide to go to the ER. I guess my question is, when do you know it's time to go? I can still swallow, even though it's kind of hard. I can cough. I'm breathing okay as long as I'm sitting up and not exerting myself. My hositpal here at home is not experienced in myasthenia gravis and I'm afraid I'll be told I'm crazy and be sent home. But on the other hand, a hospital is better than no hospital if something bad were to happen. Sorry for rambling. Thank you everyone in advance! Have a great week!
I actually struggled with similar symptoms this evening and the same debate, starting of course right after urgent care closed.
I’m an RN, I do phone triage often sending people to the ER or to the UC, and when I was diagnosed 9 months ago it was because I had been using ice during work to get through shifts. I hate being cold but ice is my new best friend!! When my labs came back seronegative my doctor had listened well enough, and knows me well enough, that he sent me to the neurologist tout suite anyway; she diagnosed me fairly quickly and also told me I had probably had it for about 10 years at a very low level.
With my job I’m good at being analytical about it - but all the same, when it’s your body you’re trying to assess - how well am I swallowing, what words am I having trouble saying and what does that mean for swallowing and breathing, the decision-making isn’t a whole lot easier. While I’m very comfortable in an emergency room I don’t like being the patient and I don’t want an unnecessary bill anymore than anyone else does!
All that said, it’s best to go before a full-blown crisis if symptoms seem to be progressing. Just as all patients are different I would expect that different episodes will be different also. Sometimes you may have more time, other times you may not. While it’s understandable to fear some small hospitals, sometimes they have great doctors, and they should certainly be able to tell if you’re having respiratory difficulty or need to be intubated!! It’s easy enough to avoid eating and drinking for a bit while you make a decision, but if you have trouble swallowing saliva or water, and you’re unsure about your breathing it’s much better to to call 911 when you have a progressing concern about your airway and get evaluated by the EMTs - they’re very good at intubating people, and that’s really the bottom line, Because if you’re having trouble breathing they’ll intubate you first and worry about cause later, which gives any ER time to evaluate.
If your hospital is affiliated with a healthcare system find out the best way to be sure your health history is easily accessible by the ER so that if you do show up they’ll have your diagnosis quickly. I’ve even considered having “Myasthenia” tattooed where an EKG lead goes, just to be sure - except I’ve never wanted a tattoo!
If you didn’t go this time, it might be wise to look into ranges of EMT response times, since driving yourself wouldn’t be a good idea and you may need to factor in how badly you feel versus how long it would take them to get there.
I hope you’re feeling better. Our doses are very similar although I’m not on IVIG, so it was (weirdly) good to know I’m not the only one having scary symptoms when my dosing isn’t real high.
Laurie