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 am going for a second opinion this Friday I have been writing things down has anyone more I can do. My wife talks about my mood swings and I how tired and my speaking. I have a list but I want to be specific when we speak. All the test the other neuro did I have made sure my family docotr has and he has sent them I am going to take all my medicines with me. Like all of you there are good days and bad and days you don't care I want to feel good and I am if it kills me. I mean hell I go to bed at 7:30 ot 8 it is 3:22 am I get up at 2 lay there a while then come in here to see who else is up. It is like you walk in a dream and nobody understands. My wife has been getting upset with me because I am short or don't say anything and I don't want people arond me at all. I am a little angry inside lke the rest of you something has been taken away and I can't do anything then there is the future just not knowing. I'll quit complaining sorry just talking I guess they say you will have a normal life bull. Alright my vent is over hope everyone is asleep and has a good day tomorrow. And Good Morning
I hope things sound a bit more hopeful when you discuss your symptoms with your new Neuro on Friday.
Lack of sleep for me makes things look so much worse and it sounds like you react in the same way. Fingers crossed you may get some answers soon and begin a treatment plan that sees you progress in the right direction. Soon hopefully there will be more good days then bad.
Best wishes
Gez
PS. There will always be someone awake to listen to you!! Friends from across the seas!
" It is like you walk in a dream and nobody understands."
.I am in Australia. Hang in there vent all you like .We know what you are going through.Good luck Friday.
Lorraine
I don't expect ever to be "normal" again, however, I would like to sleep, walk, talk, eat, etc., with actually having to worry about the details. I am optimistic that will happen if I follow the advice coming from my neurologist and fellow MG'ers.
It is hard to try to be patient with others while suffering, however, in the long run it certainly is the best thing to do--too many folks who could be at home end up in nursing homes because they are too "difficult." So, I am trying to be as gracious as I can with my spouse and friends and neighbors--in the hopes they won't stay away because I am too concentrated on my own problems. My dad set the example for me--he had advanced Parkinson's and handled it very well, and was able to die at home in his own bed mostly because he made a huge effort to be gracious, patient, and showed interest in other people's needs and problems even while he became very dependent on others for his care.
Good Luck
We are walking on this path together. I know how frustrating this can be, but as long we are alive, we got to continue going and fighting for our well being.
My best to you!
Marcela
Good luck my friend on your appt on Friday. I know when I was first diagnosed I slept all the time, but it does get better. I do still have those kind of days just not as many.
It is frustrating to be told how good I look when in all reality I am having a bad day. I also have had an angry attitude with the disease, just think it is part of the grieving process of this disease.
I do know that since my husband went to the mg conference he understands more.
All I can say vent away as we all understand and are here for you.
Hugs from Texas,
Annette
Hope things go well Friday.
Although we are all different and in different circumstances so far as work and families and other activities, we all have to deal with what is essentially an invisible illness. What I have found that might be helpful to you at work was to explain to one person exactly my problem, mainly I am fine until I am not and then why.
Once the diagnosis is established the boss should know. Those two people need the full information and how you fell about your work and how you plan to cope and ask for any input they might have , letting them know you are open to other ideas as they occur.
Then let them run interference with the rest of the people at work as needed. You end up having to let people help you when you don't need it to have energy for other things. That takes some humility and self discipline, at least for me.
In the Links Group there are a number of articles and discussions that may help with the process including tips for daily living which has some practical ideas, including work. The spoon theory and a pocket full of nickles which is a way to explain to others (and ourselves) our problem, and two excellent articles, one posted by Lorraine and one by Cathi on dealing with the emotional costs of MG and ideas about how to cope. MGFA also has a section called Living With MG that has podcasts as well as other materials (many of which are referrenced in the Links Group.
A little light reading when you are up at night. :-).
Hang in there, things will get better, and all nights will not be like last night.
b.
I think that sometimes the people that we feel should understand us the most, comprehend the least. Part is denial, and part is just they are just too close to us to see. I have ranted here big time.
Some half tongue in cheek, some just very ticked off. I am only 52 and feel like I am older than my mom and she is 78. I am grateful that I don't have to work, I don't know how I would do it. I neglect my family as it is.
I have said this before, but not to you I don't think. Ten years ago I had my last child, so I was fourty two and had eleven other children at home and one married. I woke up at six , went to bed at ten. Sometimes I didn't sit once all day.
Our house ran pretty smooth. Now, I don't cook. It's frozen, takeout, or soup and sandwiches. My house doesn't look anywhere near what it used to and I look like a friggin mother toad!
I kid you not. I have put on 60 lbs. in the last 5 years and have not even been on prednisone yet. wow, I'm really gonna be a knockout then. But one thing is for sure. I do have hope since joining this support group.
I love the attitudes of these wonderful, seasoned professionals at this GAME. Don't let today ruin tomarrow for you Bear. I can't say when things are going to get better for you or for me, but these people will stay with you long after they are.
They know where you are, where you been and where your going. No one is going to understand quite like they will. I am praying that your appt. will go the way it needs to go in order to get you feeling well again. I will be thinking of you, Carla