emotional stress and myasthenia
 

Hi. I hope everyone is OK.
I would like to know if someone had to deal with a loss while in treatment for MG. There is a statement that says: emotional stress triggers a myasthenic exacerbation.
I lost a brother some days ago and, besides the soul's pain, the symptoms of myasthenia are worsening.
I know that there is no cure for this kind of pain, but maybe I can learn something from others experience.
Thanks for listening.

To lose a loved one at any time is one of cruelest things in life to endure. Yes, I have lost several loved ones during my 25 years with Myasthenia Gravis and the stress will make some symptoms worse.

However; I feel it much harder for your physical body to cope if you do not allow yourself to grieve properly. To hold all those emotions inside will only make your physical body ill & may manifest itself as an exacerbation regardless.

Allow yourself to grieve fully for the loss of your beloved brother and if you feel your myasthenia gravis exacerbating; call your neurologist. Sometimes during times of stress, people with autoimmune diseases can be given what is called "stress doses" of steroids to help the body cope.

I am truly sorry for your loss and hope that every wonderful memory of you your brother will be forever cherished.

Bluestone. I am so sorry for your lose. I know that emotional stress can really upset our immune systems and nothing can be more stressful than the lose of a family member. It is after the lose of my father in 1999 that my health issues started to come to the front. I will keep you and your family in my prayers.

Jackie

Bluestone. You certainly came to the right place. I have had MG since 1998 (I was 30 years old). I was only 34 when my husband passed away in 2002 with a brain tumor. My emotions came out all over the place and the MG stayed in check.

I eventually decided to leave my job and find a new focus. It was a very wrong move. I kept everything in at the new job and that's when everything went downhill for me. MG isn't like a tap - we cannot turn it on and off at will. And if you start to slide, you may have trouble getting back up.

Ro was right. If you bottle up your emotions, your body will react. A nurse once told me that "The stress has to leave your body somehow." For some, they get a coldsore. For others, psoriasis. Some will get shingles. We have Myasthenia Gravis.

Do what you need to do to grieve. Nothing is wrong. You need to acknowledge the pain and the hurt and take comfort that thou your heart is breaking, your brother is in it, and he is part of you and who you have become.

So let out the tears and throw the pillows. Seeking counselling is also not a sign of weakness, but rather one of strength. And if one doesn't work for you - another certainly will.

I sure hope I helped in some small way.

:hug:

Lydia

Ro, thank you for your words.
I talked to my neuro. I'm taking the "stress doses".
I'm not living near to my family. I saw my father and the other brothers these days and realized how much we are close and how much we love each other.
We lost our mother when we were children and I know how much important is to grieve properly.
Every wonderful memory of my brother will be forever cherished. Thanks!

Jackie, thank you very much for your words.
Hope you are finding answers to your health issues.

Lydia, your words certainly help me.
You are right, MG can not be turn on or off.
I'm seeing a therapist and he helps me a lot. One thing that is very hard for me is to express my emotions by talking.
As MG is a recent thing in my life, I'm still in that moment where everything is new, the fear is big, and I discovered that I can not controll many and many things in life.
I'm glad I found this place. Thank you again.

So sorry to hear of your loss. I lost my brother about 3.5 years ago and the loss and intense grief did affect the MG. The way I figure it, there's no way to have a piece of YOU removed without affecting everything.

That being said, there's nothing to be done but grieve as you need to grieve. Certainly try and manage the symptoms as best you can and treat your body in general with extra care by eating the best diet you can manage and try and not stress over little things in your life. Prioritize and rest when you can.

Again, I'm so sorry to hear about your brother. In my experience, I found the first year after my brother's loss to be so painful I could barely breathe sometimes (figuratively speaking here.) Passing time has brought acceptance and now when I think back on him it is with more fondness and happy memories and not so much the intense feelings of loss.

Hugs,

Missy

Missy,
thank you for your words. The way you figure this kind of loss will be with me.
I'm finding comfort in this forum and I would like to thanks again everyone.

Yes. I've had to cope with the loss of a loved one along with MG. The stress did definitely make the MG worse. Actually, the exacerbation of the MG started in 1999, when I underwent radiation treatments for cancer. Then the following year, my husband was diagnosed with cancer, and took chemo and radiation both. I was the one who had to get him to his treatments. He died in 2001. The same year I was in the hospital with a crisis. The crisis was brought on by starting steroid treatment for the MG, but I'm sure the stress didn't help any.
Hugs,

Hi Lois
I`m doing better. I spending some days with one of my brothers and this is helping me and him.
Hugs

STRESS??!! Ask me why I've been on disability for the last 4 years..... I survived the loss of my mother and another close relative but all it took was a negative work environment for my MG to flare-up BIG time.

Get rid of the myasthenia, first
 

If you rid yourself of the myasthenia first, most of the rest of your problems will fade away. Myasthenia is a miserable affliction and most people don't do what they need to do to make it go away...and your doctor may be the locus of the problem!

I was so severely debilitated by myasthenia four years ago that at times I couldn't walk, talk, dress myself, eat, swallow medication. I was in the worst decile, statistically for the disease. I was put on an immunosuppressant and a small dose of prednisone. I went through 17 rounds of plasmapheresis. One year ago in December, I went into a week-long coma.

It wasn't until I started on MASSIVE doese of prednisone that I finally felt I could live. I started on 100mg per day on the "on" day and 50 or so on the "off" day. I immediately responded. I am now like normal and I was at the bottom of the barrel for MG victims.

If you suffer ANY MG symptoms anymore, you may need to give this regimen a whirl. Many of the immunosupressants are worthless. DO NOT, I repeat, DO NOT listen to your doctor. Most are clueless about treatment of MG, even the finest and most studied of neurologists. Do not take no for an answer. 100 mg of prednisone will probably not hurt most people (though, they too, have side effects and you WILL need to taper and wean yourself off), but, the flipside is you may have a chance at recovery. Yuo must pull out all the stops and wage war against this miserable disease.

From,
Bottom of the barrel

Bluestone, It's been almost two years now since your brother has passed on. I am so sorry for your loss and hope you are doing okay. I have never lost a sibling and can only imagine how difficult it must be.

Curt, This person went through the loss of her brother. How could getting "rid" of the MG possibly help that? I know you have strong opinions about MG and treatments for it but this is truly an inappropriate response to the pain this person has gone through. Using her post to put forth your own agenda about MG treatments was not a very kind thing to do. Please think about what others are going through too.

Annie