Hi and welcome

the first thing i would like to say is that you are not alone, also live the past be and think the way to control mg and live a pre3tty good life.

unfortunatly with mg, you will loose muscle mass, also becoming week is a very commun happening.

we all have gone thru that and more, you have to control your meds with your neuro's help this is very important
also they are 3 fact that you should look to

1) total control of your emotions and stress has these items are the worst for control of mg,

2) control your daylies activities (work, sports ect) all must be done with moderation, and if you get to tired i would suggest to take a nap, i myself have to do it when needed

3) it is as importand that you change your standart of life,as food, no meat with gmo's, or hormones,
fish, veggies, fruits ect is great, also drink e,lectrolites as it will help to replenish your body of essentials.


do not feel despondant if you have hard time to reach your goals, we all went the same way

you may have to ups your meds, but as i said, you should consult with your neuro

best of luck, Andre

Dear Angry,
I can understand a little of your feelings, as they remind me of my first 6 months with MG. I don't know if or how I would have coped had I not found a successful treatment.

I did have inklings though of how I could live acceptably without physical strength. My background is physics, math and computers, and one of my heroes was Stephen Hawking, the man who spent most of his adult life with ALS. He lived a life of the mind. My job was primarily that already, and I could move into it entirely if needed. Just my personal life would be inactive. I figured to hire people to do what I couldn't rather than be bothered by things like lawns and house work -- planning to move to a place where that was all done for me if my wife did not survive her own battle with cancer going on at the same time. (we both made it).

A good friend of mine was diagnosed with Alzheimer's almost 2 years ago. He was totally devastated, thought about suicide and was pretty much at wit's end. His doctor suggested he get counseling and he did, was put on a reasonably strong anti-anxiety drug along with regular visits to talk about issues. After a few weeks on the medication, I asked him how things were going.

"I know I have Alzheimer's. I know it will get worse. However now it does not prey on my mind and I find each day enjoyable." Two years later, he has declined, but the medication still is effective and he enjoys life. If it takes pills to make life tenable, it beats the alternative I think.

Finally, I think we must actively pursue different treatments. Folks here who have had great difficulties, sometimes find the medicine that works for them. There are alternatives to try like Rituxan, and some of the new experimental medications. If we throw in the towel, then we lose hope and life is even more dreary. So a plan developed with our neuro to continually try something at least makes life interesting as we get to try on new side effects ;-)

I decided to change some of my life. I bought a $400 camera with a 42x zoom that brought the world to me, the world I used to walk to. I decided to collect local history (a sort of hobby) and create books of the collections (on my 20th now). I joined a writer's group, several history groups, and a genealogy group that require little physical effort but are mentally stimulating and give me things to do on my computer (sometimes I couldn't type, but have voice recognition).

Sometimes we and take a change in life as an opportunity to remake our lives. You tell us what you were and are still in loss over that. Thinking about what you could be in a future version of yourself is stimulating, and then doing it quite wonderful.

You know, we can very easily destroy our support system with negativity. So part of life is pretending things are better than they are. Sometimes that pretense is self-fulfilling.

I would never give up hope of getting MG under better control, but I would try to figure out how to make a good life out of what you have now. If Mr. Hawking could face each day with an interest in accomplishing something in his almost completely dead condition, it would seem we could too.

About the only thing that could happen to me in my life that would make me give up is if I lost my ability to think. Without that, then we might as well say good bye.

Good Luck
Russ

So sorry your mg has you feeling so bad. It really does change our lives. I literally came close to death and each time I have a hic cup with this disease I see my past and take each day as maybe close to my last. Fortunately after years of being in a bad place I am one of those people who feels it was a good thing in disguise because of what happened with my faith when I was homebound. But when I get symptoms again I get mad cause I can't do what I used to. The constant fear of getting over tired or being infected by germs that could cause a flair isn't easy.
Cellcept and prednisone is the treatment that enabled me to live again. It took a year of almost bedridden but I got through it. Yes my life changed but I was able to function almost normally. Usually one day of activity and one day of rest. Staying home is always physically easier than leaving home a lot I hope you can get the treatment you need so you can find your new place in life.

Dear Angry,
Folks on this site have given you some really good ideas and advice. Russ in particular was right on target with trying something new that you can do. Genealogy can be a fun thing and learning thing to do. You can learn about things that normally you would not take the time to do. There are all kinds of things to explore.
I had a day last week when I dwelt on all the things I had lost because of my MG. But the good Lord helped me get things back into perspective. The next day I had an appointment with a surgeon about putting in a venous catheter and in the other arm a AV fistula to use for my plasmapheresis treatments. I have had four crisis and so my neuro is going to start giving me the treatments every 4 weeks to support oral meds and to avoid anymore crisis. Anyway, this group of surgeons is the only one in town so the office was very busy. As I was waiting a young girl, probably about 11 or twelve came in with her mother in a wheelchair. She had lost her right leg and her left hand. Another young woman was there, probably mid twenties, that had lost both legs above the knees. As I watched people come and go and looked around the room, I was ashamed of myself for my thoughts the day before. I realized how truly blessed I am. So many people had such extreme injuries. As Russ said, I have a clear mind. I have not experienced anything like some of these people have every day. When we look at our changes to our lives and our loss it is natural to feel anger. But I need to remind myself of all I have. Years ago, I gave my life to Christ Jesus and he has given me a wonderful life. And when I feel the weight of disappointments because of mg, I remember Matthew 11 verses 28-30. "Come to me, all you who are weary and burdened, and I will give you REST. Take my yolk upon you and LEARN from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yolk is easy and my burden light." I am learning so much about so many things that before I did not have the time to pursue, I took so many things for granted. I also read Jeremiah 27 verse 11, "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Those verses in that section are very helpful. Sometimes I feel alone but I know that I really am not. MG is taking me on a different path, a very difficult path, but it is just a change in the path. I have become a more humble person. I have made some very special new friends. I have been able to tell others about mg who have never heard of it before and get the word out that may help someone else. My life has slowed down, less pressure. I have time to smell the roses if I will just do it.
I hope you do get involved in a new group and hobby as Russ suggested. It is always fun to learn something new and meet new people. I wish you well and hope your medicine gets adjusted soon so you enjoy your life.
My heart and prayers are with you. I do care. Regards, Martha

Wow.... I have felt very similar. It hit me one day that it's a stage of grieving..... We have lost our old self and need to allow ourselves the time and permission to grieve. I was in shock and denial for quite awhile, then moved to anger. I am not quite to acceptance, but know it will come. We are grieving for what we were like in the past, as well as some of our hopes and dreams for the future. Life isn't over, but changing. Our goals and dreams may need to change a little, but hopefully we will come to accept that. I think it's going to take some time, but we will learn to celebrate and love what our bodies ARE able to do. Everyone faces trials.... MG is ours. it's so nice to know we are not alone.

Bluejay96
You put it so well.

Thank you all for your kind replies,. I have tried just about everything and read every book written on coping with chronic illness, but my pride and stubborn nature are problems I've had to deal with all my life. MG just makes everything harder. I'm always "walking through mud" and many days I feel like I'm walking through wet cement that quickly curing. All I can do try every day and pretend to be happy for everyone else, that alone is exhausting.

Time to seek help from the professionals? Those of us with chronic illnesses come by depression naturally -- but there are folks who specialize in helping us deal with the problem. I was to the point where I considered suicide, but in my case the neuro counseled patience and eventually my medicine worked and the depression went away on its own. However, had that not happened, I certainly would have sought some help in figuring out how to deal with it.

My wife has a very serious and debilitating back and neck problem that after surgeries has left her with less pain, but barely able to walk around. She uses a cane, a walker, and a scooter to get around. She has dealt with cerebral palsy all of her life, and now at 72, many of those problems have gotten worse. The scooter was probably the best for it allows her to get around outside and to go places (like the upcoming county fair) where she can travel about easily and yet is able to get off of it to join others at lunch etc. She is headed to an x-ray today that is likely to find no improvement in the back, and so will get to go to another 6 weeks of physical therapy under insurance. That rejuvenates her. Although she doesn't get much better, the physical therapy folks spending 50 minutes a week; the trip to therapy and back, the lunch out etc., is a happy time for her, and she does think it helps her with life.

Here is an article that talks about getting help.

https://my.clevelandclinic.org/health/articles/9288-chronic-illness-and-depression

Good Luck
Russ

Sorry you are having a bad time at the moment. I guess angry is a description that is appropriate at times but mostly I am just frustrated. I was lucky in that when I started feeling bad at 60 in 2013 I was able to retire. I gave away my motorcycles which I really liked. It was a while before I was diagnosed. I have been through various treatments(thankfully I have not had to do IVIG), had a couple of near death experiences with PLEX. Imuran nearly had me in a wheelchair and on the liver transplant list. I think back to the early days when I was eating through a straw, had to roll out of bed and catch myself before I faceplanted on the rug. I used to crawl on the floor with my forehead on the ground because my neck was so weak, I discovered the grout lines on the kitchen tile were way too wide, a noticeable thump.
Right now I am using Cellcept. I am down to 20mg of Prednizone every other day which has really helped with my weight, I think. I still take a lot of Mestinon. I can't do what I would like but I can still do much. My wife wanted to put up partitions to hide the pool equipment from view. An easy project but it's hot here and I had to do most of it in the mornings. I finished this morning, still had to throw up in the kitchen a little, cleaned that up and walked the dog.
At my last Doctor meeting my wife brought up the fact that I sit outside in the shade when it's hot, pass out. I do this to cope with the pain and lack of sleep. He told her not to worry and just let me do it, I will just wake all of a sudden really disoriented, no kidding. I push myself too hard sometimes, he says that is a good thing and she should be happy that I am at least trying. I do get hurt but eventually recover, it just takes more time than I would like.
I understand anger, I have had my share. I also have regular frustrations, I try and find something I can do rather than focus on what I can't.
Maybe you will benefit from some help as Rhansom suggested. You said you have an awesome spouse. I live for my spouse, brother, daughter numerous pets. I feel needed. I can't give up.

I feel bad that you are in such a dark place. I too have been there. Three months ago, I was doing what I loved. Went fishing twice a week, started my gardening. I was hauling around 50lb bags of soil, filling 5 gallon pails with soil for plants and veggies. All of a sudden, the bottom fell out. Couldn't chew, couldn't swallow, couldn't speak clearly. Two hospital visits, ICU, Plex and IVIG. Started on meds, also now getting IVIg as an out-patient at home. Does it help, yes. Am I happy, NO. I now get tired just holding a hose to water the plants. However we look at it, you've got to play the hand you're dealt. ours just isn't a winner!!

Hi Angry MG-Woman,

I haven’t read though a lot of the comments people left so apologies if I’m repeating anything. I was diagnosed with MG when I was 11-year-old. I was an extremely active, kid who wanted to be a dancer. It felt very unfair the day my doctor told me that I would never be a dancer: I did not know that this would be the least of it. I’ve been though quite a lot, as you can imagine, as I am now a 45-year-old woman living with MG. What’s been hardest for me is that people can see my MG clearly on my face, the droopy eyes, the slackened face, the grimace in place of a smile. I have tended to go into a shell. It’s difficult to explain to people bc I’ve found so many are uncomfortable with illness. After all these years, I have internalized my feelings of worthless. When you feel worthless, people will treat you as worthless. You can see that I also carry anger and resentment with me and not a day goes by without wondering what my life would have been like if I didn't have this disease. I have never been able to accept my fate. Some do but for others, it’s more of a challenge I really don’t have a point to all this other than to say that, yeah, I do understand what you are feeling. Good luck with your journey and hope you find some peace in your life at some point. It seems that most of us don’t have a choice. We either find a middle ground or live in a kind of personal hell. My hero has been Frida Kahlo. She was in a bus accident when she was a school girl. A metal barb impaled her, breaking her spine and pelvis. Her life was defined by unbearable pain, surgeries and an inability to function normally. As a result of her disability, while she was unable to move, she taught herself to paint. And the rest is history. What I think is that even though we can’t do what we want, life can still have meaning, we just have to find it. I haven’t really found mine yet, or maybe I have but cannot see it. I think I have a ways to go still. I’m no Frida Kahlo or Stephen Hawking but hopefully, one day I will find that which fulfills me. I hope that for you too.

I think the angry woman should take her type A personality to her neurologist and get some better treatment. 85% of patients can get minimal manifestation of disease with proper treatment. I’ve read amazing things about Solaris if no other treatment working you will be able to get approved for it.
I’m not affected nearly as badly and I do feel for you I’ve been sidelined at my job treated like I’m disabled now and it ruined my career . People are small minded but what can I do I just go on. My own extended family makes steak when I come for dinner knowing darn well I can’t eat it. people just don’t care so you need to care for you.