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...
I remember being in a similar position last year I was diagnosed in April 2011. I was on maternity leave. I was able to return to work on a phased basis from July 2011. I am still working full time. I do work from home twice per week Tue/Thur which helps a lot. It depends on the line of work you are in. I am office-based my main obstacles are commuting and stairs (I just get the lift (elevator) all the time!). I also lie down during my lunch break. I had to wear tinted prescription glasses for a while. I still do but now I dont have to wear them at work all the time! You should be patient and know that each day comes with improvement, conserve your energy as much as you can (I tend to always overdo things when I feel good and pay later - am learning now though!). I am currently trying to taper Prednisolone currently on 22 mg - highest dose was 40 mg last year. In Aug/Sep last year I tapered too fast and my symptoms flared up really bad. Now I taper by 1/2 mg depending how I feel. I have been on Imuran 100 mg since Oct 2011 dont think it has started to work yet. I had a tel appt with my neuro yesterday she is pleased with my progress. I am due to see her in person in Oct. She wants me to try and taper a bit further but I am skeptical I will wait and see how I am feeling at the end of this month. I also take Calcuim and other things for stomach pains etc. I am in a happy place now but last year this time I just didnt know if I could continue to work full time and that really bothered me as I love my work. Now I dont have those concerns. It took time but I got there. My daughter is almost 2 now, I can change her nappy and play with her. My husband is my strength and my parents provide huge support. This group really helped me as well.
Thanks for sharing! I too have realized that when I feel good I push myself too hard and then pay later. I also noticed that when I drink beverages with caffeine my symptoms worsen when they are present. So, I have been trying to stay away from caffeine and, in addition, processed foods (the latter being more difficult). I feel better eliminating caffeine for sure, although the absence and ritual of morning coffee leaves a big blank space.
About jobs, It's good to hear that employers have accommodated some people to allow a period of rest during the day or reducing hours to help lessen stress. I actually believe I have to change careers even if I go into remission. I was doing a job that required long hours outdoors in all weather in remote regions doing physically arduous tasks. I would hike all day in the sun, then sometimes afterwards get called on a search and rescue that would require me to hike wherever or be on call for an additional amount of time. So, I am assuming that even if I was in remission, being that physical could potentially cause me to experience MG symptoms due to the amount of stress on my body. This stress could cause harm to myself and others if I was unable to do my job. I am very sad about this...
Luckily, like you, I have someone that has really helped me. I also have a supportive family. These things have helped immensely. I am looking for work or maybe going back to school.
We do have similar cases, so it's nice to hear that you are doing so well and can play with your 2 year old. Crazy that you have worked the whole time and have a little one! (I feel a little guilty about feeling tired when I only have dogs to take care of! :)). I started on 40 mg of prednisone earlier this year and have been slowly tapering. I did taper too quickly and had a flare up.
Good luck on getting better!
I was working full time when I was diagnosed. I continued to work full time through the adjustment of my meds. Though I must admit, while I wasn't working I was a total couch potato. It took me about 9 months to a year before we found a good med dose and I finally started being able to "do" things again (like exercise). And I didn't have the surgery you mentioned to recover from.
Regarding classes, could you take any of your classes online? I don't know if that would work for you, but it's worked out really well for me. I am trying to learn some new skills to be more employable (I'm currently unemployed, but it's not MG related) and to expand my job opportunities. With an online class I can watch the videos when it fits into my schedule and when I'm feeling up to it.
If it helps...I was a dancer most of my life. It took me 3 years to be able to be at the point to go to a dance class again. It was a major accomplishment for me because in the months after I was diagnosed I was so weak I thought I'd never be able to dance again.
Take care.