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 have a prescheduled teeth cleaning appointment tomorrow. I am on a trail of generic Mestinon. I know the receptionist and dentist as acquaintances outside that office. I felt it important to let them know it might be possible to have an energy crash and not be able to make that appointment and that I might not know until nearly the last minute after telling her about the possibility that I have MG and briefly what it is and that I could be walking around with or without a can, and would be so weak on a severe exersion crash to put me to bed for hours. That the weakness is so severe then that I can't even press a laptop key with one finger. She suggested coming at canceled appointments and I told her I wasn't driving right now and would need to find a ride not just jump in the car and go. She got really hung up on their office scheduling policies and almost in a panic that if I scheduled an alternative to be the last one of the day, that I'd be taking up primetime spots when everyone wants to get in. I ended up telling her that my health issue was as serious as MS or MD, something I felt she might could relate to. That was before I tried to come up with an alternative that would make easier on the hygienist if I had to cancel. I told her I can not predict my what my body will do. Of course she will take it up with the dentist who also sees me at church when I can go and knows a little something about my frustrating weakness issues. She is usually a very sweet accommodating person. I bearly got an acknowledgement of my struggle which is also not like her. I wonder if my situation was just more then she could wrap her brain around since she knew me more outside of the office. I know the doctor does not charge if it's due to a medical reason for canceling within 24 hours. I've never ditched on an appointment without way ahead rescheduling.
I had somewhat of a similar incident with my beautician whom previously I had a general discussion and had to cancel my appointment at last minute from exersion crash just before leaving my house. I was going to have my hair colored, so that's a two hour appointment. She said to make an appointment when I feel better. I thought maybe by that point my hair will be three shades gray, dark brown and red, and Repunzal length. She usually has another appoint scheduled when my hair is processing, and I told her it would be a good idea to have one of those scheduled in case I had to cancel at last minute before the appoint because of an energy crash. When I can go back it will be a late appointment there from now on. I now learned I do better later in the afternoon, especially now on some medication.
What is even more weird I went over a week on trial medication without having an exersion crash, and yesterday I had one. I would have a day after a busy day with much less energy and a quieter day but not one that force me to bed.
How do you deal with appointment making for these kinds of things?
I had somewhat of a similar incident with my beautician whom previously I had a general discussion and had to cancel my appointment at last minute from exersion crash just before leaving my house. I was going to have my hair colored, so that's a two hour appointment. She said to make an appointment when I feel better. I thought maybe by that point my hair will be three shades gray, dark brown and red, and Repunzal length. She usually has another appoint scheduled when my hair is processing, and I told her it would be a good idea to have one of those scheduled in case I had to cancel at last minute before the appoint because of an energy crash. When I can go back it will be a late appointment there from now on. I now learned I do better later in the afternoon, especially now on some medication.
What is even more weird I went over a week on trial medication without having an exersion crash, and yesterday I had one. I would have a day after a busy day with much less energy and a quieter day but not one that force me to bed.
How do you deal with appointment making for these kinds of things?
Be aware of the medications that could cause MG to flare. Lidocaine being one that most dentists use. My dentist uses carbocain on me. It's short acting, so he know I might need another shot before he us done. You can find a list of medications to avoid on the previously mentioned web sites.
I have had to cancel many appointment and social activities because I was having a bad day. MG will get better with the right treatment. Learning to say NO (without guilt) is the best thing you can do for yourself right now besides resting and not over doing. I have a constant struggle with what I want to do and what I know I can do. Good luck to you!
My Dentist knows well to keep that suction-thingy close at hand, as the Mestinon has made me quite a spitter.
Take Care!
My guess is that the same reasoning could be used for someone with MG who is being treated with an immune lowering medication. I would be more worried about the introduction of an infection than getting a weak jaw or MG problem during the process. You can always opt out of the procedure midway if it is a problem. You can ask the the hygienist to be less "thorough" in the procedure too.
Then to be proactive, get something like a water pic to do your own cleaning daily cleaning with a tool that doesn't break the skin and makes the cleaning at the dental office less likely to be so invasive.
Part of the problem we have is the anticipation of problems and the stress that creates. I like to wait until the problem occurs before getting bothered or worrying.
Good Luck
After my crisis my hairdresser picked me up at my house.
Maybe you could find a hair dresser that does walk ins.
Maybe a Monday am would be good for your hair too. At least with hair if you got to the appointment it is restful.
I hope they find something to manage your MG better fast but in the meantime I would focus on resting before hand. Also for your hair appointments, maybe you can find a friend you trust or someone you know that does hair and can make a housecall and understands your situation better. I know there are some people that are happy to help with that if they can, check at church. I hope that helps. Take care.
The first two appointments on Mestinon were much improved. I am getting worse now and could tell at my last appointmet. I always book with the same hygenist who knows my difficulties well. She cleans me in a more upright position. It is harder on her back but she's seen me have coughing/choking attacks before. She often skips the salty spray if I'm getting weak and goes with the manual scrubbing. I always take my Mestinon about 30 minutes before the appointment. I normally have dry mouth so the extra spit from Mestinon has made my oral issues less extreme.
Flutebell