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...

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Muscles & Bones
/ Myasthenia Gravis Support Group

28 YRS OLD- NEW and AFRAID

Cam2019
Cam2019
I am newly diagnosed and terribly angry an afraid. I began with a lot of optimism until I realized I was even more rare than the 'average' myasthenic. All my symptoms onset in a matter of about 5 weeks and I was diagnosed very quickly. This all happened 2.5 weeks before my wedding. Then I caught a cold on my wedding day and had too= change my honeymoon to closer to home, only to be hospitalized as soon as we returned.
Understanding that this is not an exact science I still get frustrated because the 95% of the patients the doctors have dealt with are 50+ and are not as active in life or the workforce as I am. They tell me something then have to recant it because I am not like them and they under-estimated how it would effect me.
I work as a health fitness specialist and I can no longer teach my classes. Most days I can barely hold a small 5 lb weight more than 30 seconds. I cannot demo exercises for personal training, I cannot run my adventure races for fun, swim to relax, or type some days. I even struggle to sing which is a hobby.
I have tried to adjust but I keep getting knocked down. The medical bills are crazy, and I do not even know the proper channels for medical absences at work or anything because it is rare in my field outside of maternity leave. I even had to buy the dragon program just to do homework for school because I am in school trying to get my doctorate and being 2 years in I do not want to quit.
I FEAR I WILL NEVER HAVE ANY SENSE OF NORMALCY AGAIN AND I AM ONLY 28!
larissam
larissam
Welcome to you with virtual open arms. Despite our differences in ages and regardless of our passions and varying backgrounds we have all have shared similar experiences. Like you, I was also diagnosed quickly. I count myself and my family fortunate for not having to endure the hardships of those who struggled for theirs or are still waiting.

The group is here for you. I will also reiterate the need for an MG specialist as others have already mentioned.

I am sorry that you have been handed this diagnosis. Be kind to yourself and let us know how you are doing.

Hugs, Larissa
mathewsc3
mathewsc3
Well I was diagnosed at 37. I personally think folks actually have mg at an earlier age but often see symptoms as something else. My advice would be to stay as stress free as possible. Be very mindful of medication and doses. A doctor that is readily available is important. I spent years fighting MG. I know its tuff but its important to find quality in life.
Take care
deleted_user
deleted_user
I was diagnosed in Aug '11 at the age of 43. Like Elinor, I am the sole provider for my daughter. I felt lost until I found this group. When I was first diagnosed I missed out on a whole year of teaching (I teach kindergarten)...had a thymectomy and a few other bumps in the road. Went back to work last year and returned again this year. It hasn't been easy, I still get tired, but I haven't given up and I haven't given in. I have MG, but MG doesn't have me! Hang in there...and remember-someone is always here for you...we are part of your family now.
Bamboolilly
Bamboolilly
Welcome. we all know what you are feeling. I was diagnosed very quickly, so like you, my activities pretty much came to a halt. But, it's been a year and a half, and I am able to work -- not too much else at this point, but I count my blessings on that. I rest the rest of the time. Please try to keep your stress level low -- because it will help. I also had a thymectomy a month after diagnosis, so my recovery has been slower than most. But, although I want to be more active now, I'm hopeful that will happen gradually. This is a great group for support. Be sure to ask when you need it :)
arniebb2
arniebb2
Welcome to the group. Like others have said, finding a neuro who specializes in MG is of primary importance. The disease is far too individual to be treated by a neuro without extensive MG experience. It will take time, but with the proper meds for you I hope that you will be very much better. Please lean on us when you need to.
Claire....
Tim62
Tim62
Welcome to the group. So sorry to read of what you have been dealt. Like you, my symptoms came on suddenly. Hang in there, things will get better. Congrats on getting married. Please keep us updated on your path toward wellness. May 2014 be a much better year for you.
ShanAlis
ShanAlis
It may seem like many of the people on this site are older but there are some young too. I rarely write anything but thought id add a reply for you. I'm 23... diagnosed last year. Before being diagnosed i could barely use to a pen to write (i was at university so doing homework and assignments was a challenge) had weakness in my arms, hands, voice, eyes, feet, breathing, facial muscles... the list goes on. Now over a year into treatment later i just returned from Costa Rica yesterday where i went surfing (which is exhausting and i outperformed 90% of the people who do not have MG), followed by white water rafting, followed by zip lining and mountain hiking. Things do get better. Am i a 100% and still get extremely angry and frustrated sometimes? Yup. The good news and bad news is that we dont know what the future holds. It could be very promising if we just keep fighting.

Good luck to you :)
ShanAlis
ShanAlis
Sorry i meant to to say i'm NOT 100%... but things are much much better with treatment.