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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camybaby 02/11/2011

I am 20yrs old & its been hard for me to take in MG. I am currently on Mestinon & Prednisone. I was on Imuran but it lowered my blood count in December so it was Discontinued. i became weak a month later which was January 20ish so i had to get ivig treatment then. & i Ended up getting my Video Assisted Thymectomy On Feb 1st & my surgery turned out great. & now my neurologist told me i should b getting weak soon since the ivig only lasts me a month & also since im not on any kind of immune suppresant. I am just so tired of having to do so many things & i thought i wouldn't have to do anymore ivig i am emotionally exhausted this is hard for me to do. & im really scared & nervous about being put on a new kind of immune suppreasant. i think i just read so many things on line or just relate myself to other ppls stories so because some treatments didn;t work out for them. i feel like im not going to have an success from my surgery & this makes me really sad because i really do wish to atleast get off the prednisone. then again my Neuro says it would take up to two yrs to find out & its only been a week & i know it takes time but i feel like its been alot for someone my age to take in especially since i feel like i have no one to talk to at home. Even though im stable & doing good right now i feel like the worse is to come & i don't want to think or feel negative but idk how to help myself think positive. i hope i can get something good out of my thymectomy & im nervous about a new medication. :( & ivig treatments make me sad. i think i need some serious counseling.

Hasanyone been able to exercise?
Is it possible to lose weight while on Prednisone?
How does everyone stay positive?

Sarah100 02/11/2011

Hi. My 16 yr old daughter had IVIg and thymectomy when she was 14. All the docs have chosen to keep her off prednisone and immunosuppressants due to her age and gender. Her recovery was slow (and viruses knock her out) but now she goes to high school full time, has a part time job and a boyfriend. She naps all the time and sleeps a lot on the weekends. I do as much as I can for her-laundry, cleaning, food, taking care of her car so she can just focus on school and work. Your nuero should write you a prescrip for unlimited PT so you can exercise with assistance. If you are "down", ask your nuero for a low dose antidepressant. It helps with the stomach side effects of mestinon so it's doubly good. Have you also tried birth contol pills? My daughter does 9 weeks "on" and it's eliminated the increase in MG symptoms around the period. Good luck.

judithwilson 02/11/2011

Hi Camy baby,

I just started PT, 2 times a week and I only wish a dr. recommended it sooner. I also started swimming again. It's frustrating, because I use to swim miles and now I'm lucky to make a lap. But I will keep at it and hope to get back to long distance swimming,
And your question about how does everyone stay positive? I know for myself, I do have sad days and feel down. But I remind my self that tomorrow is a new day, a new hope for feeling better.There is always hope with mg. I do take a low dose antidepressant and see a counselor. You are just out of major surgery. You're doing great!

camybaby 02/11/2011

Hi everyone on this post both mentioned PT? What is that?

judithwilson 02/12/2011

Physical therapy. If you are lucky and your insurance covers this, I would recommend it I was having a lot of pain and weakness in my neck and this has helped.

you probably would have to wait until you are fully healed from surgery

deleted_user 02/13/2011

It's been 3 months (and 5 days since my thymectomy...but who's counting LOL!) and I'm kind of tired of people telling me that I look great so they assume I also feel great. Then I have to proceed to explain to them that now we have to wait and see if my symptoms reduce or go away all together and that could take up to 1-2 years. One friend asked me the other day "OH, are you still dealing with that?".......ummmm yeah, duh! :-) Like they found my slurred speech to be bothersome to them! It's been 6 months total from my first symptoms that came on like gang busters. So hang in there, I think we all have to go through some sort of "grieving" acceptance phase to deal with all of this. I too have felt like I might need some treatment for depression, I think it is all part of the coping skills we are needing to tap into. I get frustrated too as I can't do as much as before but I have been walking a couple times a week, walking about 1 mile after I teach at school. I do pretty good on the flat streets but then when I get home and have to walk up 6 small steps to get to the front porch the shaky knees kick in and I wabble my way up. Then I need to rest awhile before I cook supper but it seems to get better especially when I am having a good med day.
The best part of the day for me is the first thing in the morning when I wake up and feel good and haven't quite remembered that "oh, yeah, I have MG and now I have to get up and take meds and start the roller coaster all over again today" So that short little amount of time while I am waking up puts a smile on my face for a short time each day. Hang in there, think we need to think in terms of months and not days when hoping for good results from the thymectomy.

cgreens 02/13/2011

My Neuro reccommends PT also....I am not on Pred, but I have gained a little weight due to not being as active. I am hoping I will be able to do more in the future and work on it myself, but I may change my mind and opt for PT.

See if you can get it done!

My two cents.

Best wishes for peace,

TJ

deleted_user 02/13/2011

Hallo camy, I am so sorry you are feeling sad. I know that all too well. Also, it is quite common after surgery; all those drugs they use during surgery can mess with your moods. I have not been able to exercise as of yet, and I am one of the odd ones in that Prednisone made me loose weight. (I can't eat when I feel 'edgy', which is how it made me feel. Sorry. I hear most people gain on it.) You say you feel emotionally and physically exhausted. That is OK; you were diagnosed about a year ago, yes? Well, you need to grieve your healthy self...don't be too hard on yourself. It is OK to feel bad at times. I am always here, even if I can't get online everyday. You have a special place in my heart, and I am sending good vibes up to Fullerton! Hang in there, Love, sleepyeye

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