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 am a full time sales rep who works on the road most often in hospitals if you can imagine the irony in that. I have 2 children and I am trying unsuccessfully to have a complete life. If i travel for a few days, i end up exhausted for more days than i travelled. Friday night my son ended up with a play date i couldn't say no to and i missed a dose of mestonin.. lets just say the entire weekend ive been on the couch. Got in the shower and made dinner tonight.. now i am so anxious to go and try once again to be productive for 5 full days...ive worked 30 days in a row before dx and now i am fearful of 5? Lets not even talk about the anxiety of walking thru airports alone or having speech that sounds "stroke-like" when dealing with well meaning RN's....i just started prednisone 20 mg once per day last week....mestonin is pretty much as needed at this point... is this really how its going to be because if it is i need to make some huge changes in my life.
If you have generalized MG, and don't just go into spontaneous remission, it is usually about six months before you are settled, given a good doctor and good response to medication. A few days of 20 mg prednisone and going off without your Mestinon just isn't going to cut it, I wish it would. We are used to infectious diseases and specific medication, and if a dose is missed or delayed it doesn't necessarily cause any trouble, but this is autoimmune, a lot less is known about it, and medication has to be individualized even for those who have classic symptoms and onset. If you haven't read any of the overviews in the Links Group, please do. They give you a good idea of what MG is about and the medications used to combat it.
For many of us, the unpredictability and inability to plan is one of the most difficult parts of trying to manage with work and life in general. You need to have a good doctor and a good working relationship, so if things change fast (and they may) you can get in touch with someone who knows what to do with you. :-)
I am so sorry you find yourself among us due to your MG, but I have found it a good place to be. Keep your Mestinon with you. A lot of us keep it in a pill box on a key chain (like people who carry nitro). We carry alarms with us, too. Mestinon and the generics have a narrow storage range, so we have to keep refilling our pill boxes--can't just leave a bunch of them in the car, etc.
Hang in there, b.
Mestinon has got me by for the last year, but I am at the point that I need to go further, and will be talking to Neuro about immune suppressants ; I'm hoping to stay off of Prednisone, but the immune suppressant take months to upto a year to kick in, so I may need Pred depending on how I feel.
It WILL get better as you adjust, and remember always that sleep is your friend (not just a good night's, but a nap during the day too). Depending on you neck muscle(s) involvement, a CPAP machine may be in your future ; it's worked wonders for me, I never knew I even had sleep apnea, but I DID know I felt like death warmed over every day. The CPAP has helped with that.
I have small children, and a saint for a wife. It's been tough on them, as going to work is more than I can handle a lot of the time. I'm not as involved, or even as pleasant as I used to be, but I've gotten better. It will for you too. I'm just glad that I'm still here ; some diseases don't allow that. Bless.
I work M-F 8-4:30 and by the time I make it home (if I didn't have to have my husband come and drive me home) I am nothing but a blob. By the time the weekend comes I sleep in until about 11 or 12 and then take a nap around 3-6 or so. There is no such thing as a social life with MG except here. You can't hang out with your friends all weekend or go to shows and activities, etc. At least I can't and I don't want to speak for others but this disease is very isolating.
You live your life coming and going as you please and then like a bolt of lightening you are told to suck it up and knock it off. It seems like MGers are some of the hardest working people and we aren't happy when told we can't do this or that. It takes a very long time to learn our limits.
You will have to figure out what you can and can't do when it comes to traveling. Ask for a wheelchair to get you from one gate to the next. You can asked to be seated before others and ask for seats closer to the front of the plane so that you don't have to stand up for a long time to get your bag out. Or better yet don't take anything that doesn't fit under your seat. Take lysol or clorox wipes in a zip lock bag and wipe everything around you to keep you as healthy as possible. Take your mestinon EVERYWHERE you go and at least 2 days worth of extra in case you are delayed or miss a flight. There are so many more things that you can do so you've come to the right place.
I hope that you do feel better soon. Once the prednisone is working for you a little more you'll feel better but not "like your old self". I wish there was something better to tell you. Good luck and best wishes.
Angie
I dont take mestinon as it didn't work for.me. but I carry extra meds and a ok to jot down issues..what
helped through the day. Etc. I go back and read them and realize its been a journey. Also..antidepressants have really helped me.
Find your path. I'm working on learning to be chronically ill...ain't easy but its a journey.
Best wishes..and hugs
Barb
Keep track of symptoms and report back to your neuro how you are feeling. A good doc will work with you to make and meet your goals.
Tip of the day..ask for a wheel chair when at the airport, even if you are feeling o.k. Symptoms can change suddenly and you want to reserve your spoons for the reason of the trip and not the endless walk from A to B.
Hugs, Larissa
I understand your situation . I have my own business and used to travel every 2-3 weeks. Now, if I'm lucky, it's every 3-4 months. Travel is just plain hard on us snowflakes.
I have Mestinon everywhere. In my purse, desk, nightstand, briefcase, computer case, makeup case. I've learned to take it without water too.
I say all this because I've seen others push too much, and get worse. Please talk with your neuro about what you just experienced. It's so important.
Wishing you well,
We stop.
You need to make big changes.
Slurred speech is not good.
I pushed and ended up in intensive care for weeks.
Believe me ..it can and most likely will get worse if you don't stop what you are doing and REST.
It took about 6 weeks for prednisone to kick in for me. I was on 20 mg at my highest dose too.
I panic if I don't have my mestinon with me at all times.
I work a full time job, but I have a low stress job (most of the time), and I can rest whenever I need to. Learning our limitations is the hardest thing.......
Keep in touch.
Barbel