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...
Not coping well....is seriously an understatement.
It's only been a month, and feels like a forever since mg dx. This weekend pushed me over. I have been fighting...denying...whatever you want to call it my dx. I've been having such a hard time wrapping my mind around it. So much so I had started the predinose, out of fear of my issues.
Friday morning I found myself struggling to take a breathe. Laying on my bedroom floor using all the strength I had to just breath in and out, while tears flooded my face. I just couldn't believe I was that incredibly weak. How did this happen? No strength or air to call out for help, my mind rushing with thoughts. Just months before I would work hours into the night on our home remodeling after working 9 days at the office. I still don't understand this. Seems like it's all happened so fast.
Obviously I'm taking the predinose now. Yesterday I had an uncharacteristic outburst of screaming and crying and wonder if I'm losing it completely. How do you cope? I want my old personality and body back. I keep telling myself things will get better, yet so far they've only seemed to have gotten worse.
It's only been a month, and feels like a forever since mg dx. This weekend pushed me over. I have been fighting...denying...whatever you want to call it my dx. I've been having such a hard time wrapping my mind around it. So much so I had started the predinose, out of fear of my issues.
Friday morning I found myself struggling to take a breathe. Laying on my bedroom floor using all the strength I had to just breath in and out, while tears flooded my face. I just couldn't believe I was that incredibly weak. How did this happen? No strength or air to call out for help, my mind rushing with thoughts. Just months before I would work hours into the night on our home remodeling after working 9 days at the office. I still don't understand this. Seems like it's all happened so fast.
Obviously I'm taking the predinose now. Yesterday I had an uncharacteristic outburst of screaming and crying and wonder if I'm losing it completely. How do you cope? I want my old personality and body back. I keep telling myself things will get better, yet so far they've only seemed to have gotten worse.
My DX is less than a week old so I am new to all of this and am still having moments of extreme frustration myself.
The only thing that keeps me sane right now is focusing on living in the moment. Get through this moment, don't worry about later today, tomorrow or next week.
Wishing you peace.
hugs!!!
M
I hope it gets better for you. HUGS!!
Angie
(1) Try to relax . . . I know everyone tells you that, they tell me too. But it is necessary since MG reacts to stress.
(2) Try not to lie flat when have breathing problems. Elevate your upper body. It will make breathing easier.
(3) Cool off. The colder your body is the better it will work.
(4) People with MG can experience sudden emotional swings. That happens. Steroids can make you feel flaky also, but the trade off for your medical need is necessary at present. I was an emotional rock--always stable until MG hit. Now I have PBA (you have seen the commercials on TV). That can go along with MG.
(5) Give yourself permission to go through all your are feeling. They are normal and part of being human. Don't give up, keep going. You are not alone.
(6) You are still very new to MG. Keep learning all you can about this disease and learn from others about coping skills. It will change your life in ways you never expected. But you can meet and conquer those changes.
(7) Don't hesitate to talk to others who have walked where you are about to walk.
--Kerry
Prednisone made me worse at first. I remember laying in bed, in the dark, barely able to live calling my neuro. He said yes you need to stay on it. It made my breathing so bad eventually it mad ,
Me better.
To put it mildly...trip to nasty place but.........it does get better. Took a year before I saw real improvement.
As I retread you post.....did you have reaction to prednisone? I wasn't sure.
Oh my goodness I know exactly how your feeling having been down the prednisone road many of times. Emotionally was where it affected me the most over the years with sadness , anger and much anxiety
It took some time to not worry of yesterday or tomorrow and concentrate on today. To this day while I'm down to 2 mg of pred I still have that same mentality as emotionally it's still has an effect on me.
Kerry , Maureen and the others are all right in my opinion and so as we are all snowflakes with mg stay focused , keep trying and never give up. If I would have given up years ago I wouldn't be in remission like I am now.
Mg tests us every minute of every day one way or another however it's our spirit and our un willingness to keep pushing foward no matter what. When we are given lemons , we will make lemonade as my Mom still reminds me to this very day.
Keep the faith Elle , we are all here for you,
Cj
A year and a half ago I was on 60 mg of prednisone, 150 mg of imuran and 60 mg of mestinon 3-4 times a day. Now 200 mg of imuran and 4mg every other day of prednisone. Keep us updated on how you are making out!
Alix
I can so understand how you are feeling. I remember crying into the arms of my sister saying I just my old life back. The shock and disbelief is so raw. If I could I would give you a huge hug. It will get better. It just takes time and treatment. Take care. We are all with you. Best wishes. Gez