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...
I'm waiting on test blood test results. The Neurologist is considering a diagnoses of MG for me. He started me on a trial of Pyridostigm 60 mg gradually working up to 3 x a day. This is mostly affecting my arms and legs which has gone on 4 1/2 months. I'm on my legs for seconds when I feel a need to sit down. I do get up and walk around the house to keep my legs mobil.
Even though I sit for a shower and washing my hair it becomes the biggest thing I do in a day, and that's doing away with the second shampoo and conditioner and keeping water temperature just warm. I let my hair dry naturally unless I do it to late then sit and blow it mostly dry while propping my arms on the counter and pointing the dryer with my head bent. I have to lay down for an hour after. Now I do it before bedtime and the day before church or its likely my strength will be gone from just getting ready then I can't go. I have to leave early from church as I was crashing before, so I don't have to be in bed the rest of the day. It helps my spirits to go and it is the only thing I do outside my home in a week, other then doctors appointments and testing. I find it taxing to sit on the padded benches, so someone brings in a chair from the lobby so I can be with everyone and I bring a pillow to rest my head on so I am slightly reclined and make it through the service a lot better.
I have often gotten to the point when I try to do much of anything I'll have an energy crash to the point it's hard pushing buttons and holding the phone. I've also had the bio-chemical feeling come over my body head to toe that makes me nauseated if I'm upright even reclined. It scares me as I feel like I'm on the edge of a biological cliff and don't know what is on the other side if it. If I'm home alone I have a friend call every 15 minutes and then longer in between when the worse has abated. This stuff is scary to me. I try to stay as calm as possible and do some deeper breathing as I can. I hope this is a good idea. Thanks for reading.
My husband works an hour away so my friends from church keep tabs on my and know how to get in if there is an emergency. My husband couldn't get me by phone the other day and one of them came to be sure I was ok. What a blessing.
Even though I sit for a shower and washing my hair it becomes the biggest thing I do in a day, and that's doing away with the second shampoo and conditioner and keeping water temperature just warm. I let my hair dry naturally unless I do it to late then sit and blow it mostly dry while propping my arms on the counter and pointing the dryer with my head bent. I have to lay down for an hour after. Now I do it before bedtime and the day before church or its likely my strength will be gone from just getting ready then I can't go. I have to leave early from church as I was crashing before, so I don't have to be in bed the rest of the day. It helps my spirits to go and it is the only thing I do outside my home in a week, other then doctors appointments and testing. I find it taxing to sit on the padded benches, so someone brings in a chair from the lobby so I can be with everyone and I bring a pillow to rest my head on so I am slightly reclined and make it through the service a lot better.
I have often gotten to the point when I try to do much of anything I'll have an energy crash to the point it's hard pushing buttons and holding the phone. I've also had the bio-chemical feeling come over my body head to toe that makes me nauseated if I'm upright even reclined. It scares me as I feel like I'm on the edge of a biological cliff and don't know what is on the other side if it. If I'm home alone I have a friend call every 15 minutes and then longer in between when the worse has abated. This stuff is scary to me. I try to stay as calm as possible and do some deeper breathing as I can. I hope this is a good idea. Thanks for reading.
My husband works an hour away so my friends from church keep tabs on my and know how to get in if there is an emergency. My husband couldn't get me by phone the other day and one of them came to be sure I was ok. What a blessing.
Sorry to hear about all of the problems you are having.
Has the pyridostigmine helped? Usually, you take the pill and within a half hour you feel better and it lasts for about 3-4 hours and wears off. It is not a pill that you have to take for several days or weeks to find out if it works. If it does, that makes it much more likely you have MG. If not, you may need more of it or for some folks it does not work--but most of us do find almost immediate relief with the pills --- like an aspirin for a headache.
Myasthenia Gravis symptoms are generally getting tired quickly. We can feel normal, but if we try to do something physical, we can often start to do it normally, but very quickly lose our strength. That includes things like talking, chewing, walking. Many of us have trouble keeping our eyes open, or sometimes holding our head up.
The cause is our immune system creating antibodies that attack and block the communication between our nerves and our muscles. Mestinon (a pyridostigmine brand) helps to improve the communication temporarily. The longer term treatment is something that will turn off our immune system so it quits producing the attack antibodies and lets our body repair the communication link.
There are many conditions that include weakness and tiredness, so MG is often hard to diagnose. Improvement with pyridostigmine usually confirms MG. Blood tests to find the bad antibodies is a clear diagnosis, but folks can have MG with the test negative, so there are additional tests neurologists use to try to pin down MG or something else.
Good Luck. Hope you find out what is wrong quickly and get treatment to get things under control.
I have generalized MG. The first year or so was the hardest. Probably not because MG was worse, but, I had not learned to adapt.
I am a very active 73 year old. I had to learn to adapt the way I did things.
I have grab bars in the bath and along a long hall in my house. (I do stumble a lot, nice to have something to hang on to) I have a tall work stool in the kitchen. (surprisingly I still am a great cook, even while seated) I have learned there are worse things than not having every hair in place (it back to let the natural curls be unruly on my head. I have a sit down place to put on makeup, so I can rest my elbows on counter. Learned that chewing slowly is not only good for digestion, it keeps me from chocking in food.
Point is, you can do this. It seems easier as time goes by. Hopefully, you have a good neurologist that gets you on the right meds. (we are all different, what works for one of us does not always work for another) That is why we are called Snowflakes.
Good people here on this site. Most know what they are talking about. However, never start or stop anything without approval of you doctor.
Ok, I'm finished being bossy. I kind of feel like a mother hen with the newbies.
Peace
Dee
My Internist wasn't sure how to read the blood test results my vacationing Neurologist had me do for MG. So I have at least two and a half weeks to know. It's frustrating knowing they are just sitting there, but grateful for the trial medication. He told us that if I had troubles and needed hospital help before he returned to ask for a Neurologist.