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 just want to know how people cope with working and MG? I'm tired the majority of the time and even though my MG symptoms (droopy eyes, double vision/blurry, facial paralysis) have subsided I still feel excessively weak.
I was diagnosed with MG in Feb 2012 and told by my neuromuscular specialist that I was to not work/ go to school after my thymectomy, IVIG treatments, and while I was on Prednisone and Immuran until remission. He said that excessive stress could stymie the healing process. Since my diagnosis and surgery I lost my job, grad school scholarship and permanent working status because I did not fit the physical requirements of my position. I am at this moment still unemployed, but in remission. I am looking for work and deciding whether or not to return to school for another career; however, upon attending a couple classes this semester the stress of even that caused the double vision, extreme anxiety, excessive tiredness and facial numbness. I got nervous about having a flare up and decided to give it a little longer until I started work again or school. Are others experiencing the same and just trucking through these symptoms and I'm just wallowing?
I have never had any illnesses and I understand there are others that have much worse situations so I am writing to gain a bit of perspective and learn from others. I look forward to responses and any insights others might have (this is my first post on a forum and I'm a bit shy so I might not have lengthy responses!). On a side note I have been active all my life and very physically strong, MG has made me feel weak and unable to do many things I normally would.
Thanks for reading.
I was diagnosed with MG in Feb 2012 and told by my neuromuscular specialist that I was to not work/ go to school after my thymectomy, IVIG treatments, and while I was on Prednisone and Immuran until remission. He said that excessive stress could stymie the healing process. Since my diagnosis and surgery I lost my job, grad school scholarship and permanent working status because I did not fit the physical requirements of my position. I am at this moment still unemployed, but in remission. I am looking for work and deciding whether or not to return to school for another career; however, upon attending a couple classes this semester the stress of even that caused the double vision, extreme anxiety, excessive tiredness and facial numbness. I got nervous about having a flare up and decided to give it a little longer until I started work again or school. Are others experiencing the same and just trucking through these symptoms and I'm just wallowing?
I have never had any illnesses and I understand there are others that have much worse situations so I am writing to gain a bit of perspective and learn from others. I look forward to responses and any insights others might have (this is my first post on a forum and I'm a bit shy so I might not have lengthy responses!). On a side note I have been active all my life and very physically strong, MG has made me feel weak and unable to do many things I normally would.
Thanks for reading.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
The two neuros I have seen have both recommended I consider reduced hours. I've been reluctant to make a change but realize I may soon need to take the suggestion seriously.
Stress unfortunately is always a consideration for anyone with an MG dx. Learning to identify and manage stressors are as important as diet, exercise & medication in my opinion.
There is a wealth of knowledge and experience here. Keep asking questions. Everyone here is very supportive.
Welcome to the group and congrats on your first post!
Larissa ;)
Unfortunately, it feels reassuring to know that others are having the same issue. I felt some people in my family thought I was being over reactive and malingering, because I looked fine and they didn't notice anything. Maybe one reason why it took over a year of multiple appointments, and changing doctors multiple times for anyone to even take me seriously and to figure out that I had MG! That I wasn't shirking responsibilities and being a downer Debbie on purpose.
Basically, I just needed perspective/validation from others with MG since I was feeling shameful about the time off I have taken. I hope you get chances to rest adequately and that your body puts you into remission for a third and last time. I can't imagine having other illnesses on top of this or ones that are more severe! Like cancer or cystic fibrosis or some other sadly debilitating disease. I wish those people good healthcare, loved ones and maybe some nice chocolates. But sadly that's not the case for many.
I have been reading research papers on MG and understand that autoimmune diseases can come come in 2 or 3's. Do you have another autoimmune disease?
Thank you for replying.
Is there any possible way you can...not work at this time?
I had to leave work 2 years ago. I am getting better now and starting to volunteer. I am 58 so I am in a different boat...many of us do get better with treatment.
I noticed much improvement after a year and a half. The thymectomy takes about a year to show improvement. When we rest and live stress free it really does help alot.
I know that being home really helps
I wish I was the bearer of better news....
Ann
I think you are right about identifying stressors and that it's just as important as diet, exercise, and medication. Generally I have never been concerned about things that were taking a toll on me mentally or physically.
I admire that you've pushed through and have been working this whole time. My neurologist was adamant about not working.
Thank you for the warm welcome.
if you can not make the day, you can not make the day you are NOT imagining it and you are NOT lazy.
Willeke
However, you said you were in remission. Nothing to hang your head about. If only everyone was so lucky.
Get out there and make the most of life! Enjoy this new life you have with remission. You are 30 yrs young!
I work just fine full time, very active all the time and I am not in remission. I can get pretty close to a remissive state with mestinon, but I won't truly consider myself in remission until I am off drugs.
Now you go and show the world what you are made of!
Best wishes for peace,
TJ from CA
You're not wallowing. It's really difficult to adjust to a life and body that don't respond the way they always have for you.
I continue to work but my work load has dwindled and dwindled until I am carrying about 20% of the caseload that I used to carry. Just this month my employer offered me a quality assurance position that I can do from home on my computer. It's a huge change for me but I am thankful there is something I can do and hopefully tolerate well.
I hope you settle into something that works for you.
Cathi
I work full time and drive an hour each way, it's exhausting. Somedays I pray all the way home Im so tiered and not sure how I will do it again tomorrow.
So I rest lots! At lunch hour I lay down at work and rest with a protien drink. I try not to do one task too long so I dont tire one group of muscles out too early in the day.
I get home and that's it, nothing else is done. I sit or lay on the couch,have some cereal and in bed by 8-8:30pm.
Weekends I allow Saturday to do something outside the house and use Sunday to rest and recover so I can go back to work Monday.
I am a very social creature and this really doesnt allow me much of that but I make work a priorty for insurance/financial purposes.
If I could have taken off of work, I would right now. My neuro says it's working aginst me. I dont think you should feel ashamed of taking the time off. If you are in remission? MAybe this is part of what helped you get there:) I say-Good for you!
My hope is I too will go onto remission and then it will not be such a exhaustion to work and have a social life:)
Hugs
Jeannie
Yes, I'm glad you pointed that out because I have been wondering how I can be in remission if I am still experiencing symptoms. I see my neurologist in Oct, it's about every three months I check in with him so I'll let him know then. Currently I take 150 mg of Immuran and 30mg of prednisone daily along with a potassium pill- still not a dosage where side effects are not an issue. Also, I am not sure whether my tiredness is from my pills (Immuran) or MG. Anyway, I hope to be in your physical condition when this all settles!
Thanks for the reply.
I misunderstood your first sentance of the second paragraph. I thought that it meant that you had given up the drugs and considered yourself to in remission.
Since you have been taking Immuran for just a relatively short time, there is still time for it to start working. Six months to a year seems to be the sort of time it takes to work in most people so you have time for it to kick in and control the symptoms. Statistically you have a 50% chance of getting to be symptom free and those are not bad odds. The waiting is so difficult.
Hopefully you are getting something to help with bone side effects of the prednisone. I used to take allendronate when I was at 40mgs prednisone and I still take a calcium and vitamin D supplement although its probably not really needed at my present dose.
Good luck in October.
Gwyn
annkemp-
I can stay unemployed for a while, but I like working. It's just physically I get tired, my eyes, face... and am unsure whether I can function well at a job! I loved my previous job and was devastated to be let go. I do feel better though even with lingering symptoms. I am thankful that things are not worse. I read your profile and I have to say my MG experience is no where near yours. It's good you made it through that hectic period!
BCCanada-
I'm sorry to hear that your situation makes it difficult for working. I haven't yet come to the acceptance that if I can't make the day then I can't make it. I will try to remember that when I push myself or get frustrated.
Catnap2-
I think your right about settling into something that works. I suppose it's just that frustrating period of figuring it out.
Jeanniea-
Aw, thanks! I hope you get a chance for some time off so your body can recover.
No, I am still taking medication and when I went to see the neurologist he said that he considered me in remission. Which I'm not sure how I can be in remission when I'm still taking medication. Also, I just had symptoms recently when I was stressed out about grad school. So I dunno.
Anyway, I'm still figuring things out. I do know the odds are good for recovery, which I am hopeful will happen.
I do not take anything for my bones. I do have moonface and all the pleasantries that goes with prednisone ;) One thing that I didn't expect is teeth pain! It hurts to smile and have them exposed to air. There is also the constant foot cramps where toes get stuck in hyper extended positions while walking, but other than that things are fine.