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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Cam2019 12/29/2013

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!

carolela 12/29/2013

Hi, so sorry you are here with us!! I know it is very scary, but try to stay as calm as possible, it helps!! With the right combination of meds and if needed treatments, hopefully you will have good results! It does take a long time to get back to "normal". Never give up!!! We are all here for you.

Carole

Barbel 12/29/2013

Welcome to the group, but so sorry for the reason you are here. Stay close to this group. You will find support and answers to difficult questions. Please feel free to be yourself and ask questions. We all understand how you feel. Hug! Barbel

deleted_user 12/29/2013

Hi Cam. I'm also new here and , quite frankly, afraid. I can't offer any advice but I'll be here for a hug or a listening ear. I was in the process of writing a book when this hit me and have also ordered Dragon. I pray that with the correct treatment we can all get back to a fairly normal life.

DebSherwin 12/29/2013

My girlfriends brother was diagnosed when he was 20 with a lot of the same symptoms we have. In spite of a bad start, he was able to keep a job, raise a family, enjoy life and laugh a lot. He died recently.of natural causes, he was in his late 70's! I call that a success story. If he could do it before 'modern medicine', then we can too. Keep positive.

SeattleWriter 12/29/2013

Hi, Cam. I have just a couple of years on you, and was diagnosed at 27. It is frustrating and scary to realize that the lives we've planned for ourselves may not be the ones we end up leading, especially if a disease hits when we're (relatively) young. If getting MG early in life did anything good for me, it was instilling in me a greater sense of compassion for others, whether young, old, healthy, sick. None of us are invincible, and nothing about what happens to us in terms of diseases like MG is fair. We hold each other up through compassion and empathy.

deleted_user 12/29/2013

Welcome. So sorry you have to be here. If you need the understanding from an active person, you will find it from me. I am 50, a single mother, sole provider for my children, and a Boston marathoner. I understand the anger associated with losing the fitness you worked so hard to achieve. People who were never in great condition don't really know how much better it feels to be in elite shape than being in average or poor condition and therefore cannot fathom that kind of loss or imagine the effort required to get it back. It sucks so bad on top of the whole thing generally stinking. I am very, very sorry.

skidoomt 12/29/2013

Hi Cam. I'm 47. I've been on this roller coaster fo 2.5 years. I am a married,high level fiscal analyst raising two teenage boys. I spend 2 days every 3 weeks at iv therapy. I ran.my first half marathon the month before it all went to hell.

Recently I read "how to be sick" by toni b--- (I don't have it with me). It helped me immensely to look at and accept my new life. I have not given up hope of being able.to.run swim or snowmobile again..but until then I am calmer and more accepting.

Good luck to you and finish that ph'd.!!!

MGOhio 12/29/2013

Welcome and Bless.

I am not a Physician, but sounds like you may be a good candidate for Thymectomy ; female, young, beginning stages.

Your demographic has a good chance at remission, or at least good improvement (from what I've read) than other groups.

Know this, the Diagnosis is half the battle. IT WILL GET BETTER. Chris.

sunev1961 12/29/2013

Hi Cam,
I was so sorry to read your distress. I have had MG for 2 years and still remember that early anxiety and confusion, and heartache for your health taken has been so swiftly away from you. I can't add anymore than what has been said except to say we are all here for you. Gez

annkemp 12/29/2013

I am so sorry you have to deal with this. I have had MG now for over 3 years. The beginning is very hard because you don't yet know how it will effect you. The beginning is the hardest. I remember feeling so scared. I then came to the reality that the fear of my picture of the future was really worse than what I was going through.
Hopefully soon you will view it as an adventure.
It does get better in many ways. Treatment take time to get and time for you body to get rid of the junk before you get a fresh start. Stress triggered it for me as well as many others.
We love to be here for you and fell free to ask any question and feel free to dump your emotions.
You don't need to quit anything. Everything will just take on a new pace. You have to stay rested. You have to.
Ann

cassynchris 12/29/2013

Hi Cam, sorry you are here with us. Like the others here with the right meds you will be able to control it. I was told back in 2010 I had MG. I am 41 years old and I still have my days some good and some bad but I have my family and friends behind me and helping me when I need it. Don't give up. We are here for you

Cassy

TBreak 12/29/2013

Hello and welcome. My symptoms and diagnosis came on quick too. It's still a learning experience, about 5 months in so far. You found the right group, and you'll get a lot of good advice and direction here.

xmas25 12/29/2013

it will get easier but not necessaily as good as you had it. you can sort of adjust to it and make time to be sad about the new road you're on .just 5-10 mins a day but acknowledge the fact that life has changed and you will meet many new people and learn things about yourself. you sound like a very strong person and will/can stand tall in a new way good luck ask any and all questions to drs nothing is a dumb question except the one that goes unasked!

momsotired 12/29/2013

Welcome! and so sorry! Your life - like many of ours - changed on a dime. I think many of us - myself very much included - felt hopeless when first diagnosed. I had a very rapid presentation of symptoms and was in the ICU within 3 days of symptoms. I was bed bound for almost a month and wheelchair bound for a month or two after. At the time I thought I had to quit my job, find someone to permanently care for my children (then ages 1 and 3), never go to a grocery store again etc. Unfortunately, I am still with treatments and symptoms, but I can now totally care for my babies (3 and 5), I can go shopping and walk for a while and I can work. However, I don't do anything in the same capacity that I did. We have to make adjustments with this disease and come up with new expectations and new ways of doing things that allow us to have some sense of normalcy before hopefully...this disease just vanishes as fast as it comes.

Instead of doing classes with your class, can you just tell them what to do? Can you work in another way until meds kick in? Try to take it day by day and please don't give up!!!

deleted_user 12/29/2013

Hi Cam -

Well, since you are recently diagnosed, my guess is you are also recently married, so, Congratulations!! :)

I was diagnosed at age 28, too, and had a hard time accepting that I had to give up being active and doing the things I loved, like playing ultimate frisbee, swing dancing, running, etc. After 5 years with MG, I'm 34, still playing ultimate and dancing and very active with work and volunteering and stuff. (Let me caveat that by saying I know not everyone has the same results.) But, I also want to say that there is hope for living your life and finding some normalcy, so please don't give up!!

It is very frustrating to have to make adjustments and learn to listen to your body and not overdo it , and to wait for the treatments to kick in. That part takes a lot of patience, unfortunately.

It looks like you're in NC? If so, there are some MG specialists at Duke and UNC and it may be good for you to see them (if that's not who you are seeing already). They are also associated with the MDA which can help with costs if you see a doctor through the MDA clinics. (And, they've seen patients under the age of 50 so that might help you with that problem.)

I'll message you my email address. Please feel free to ask anything, or if you just need to vent!! I've become friends with some others our age with MG if you are interested in connecting with them, too. :)

Jen

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