I am tired of having a different symptom everyday. One day I will have choking issues, the next diplopia, the next only ptosis (this is usually every day). Then I will have extreme weakness, unable to walk to bathroom, then I'll get short of breath just walking to the bathroom and back.

I'm obviously in the angry stage of grief.


I hate myasthenia

Cassie

Hi, Cassie. How long have you had MG? Is there hope it will settle down after a while and at least be more predictable? What always gets me is that when I get a new symptom, I never know if it's going to be some mild once-in-a-while thing, or the new theme of my life. Curses on a disease that gives you such uncertainty while sapping you of energy you need to deal with it!

I'm going to see a psychologist on Friday. There's got to be some tips for dealing with this kind of chronic illness. It's not easy to get out! I'm taking advantage of an IVIG window to do it.

I also highly recommend journaling! If you write down certain factors every day, and how bad your symptoms were (and which symptoms you have, and when), you may be surprised by what patterns emerge. I thought I was noticing everything, but I wasn't! Here are some of the factors people have suggested noting:

activities; food; sleep; stress; weather (including rain and outside/inside temperatures); hormones (for women who have cycles); chemical exposure; and "other" for anything else you can think of.

Hang in there,

Abby

Thanks, I'm kinda venting, Actually, journaling is how I finally got a diagnosis. I have a calendar and I write down sx just about everyday. I do have 'cycle issues' I tend to have sx during that time. I was diagnosed about three months ago but have had sx for almost three years, but now is the worst, I've ever had.

I really was trying not to be the kind of person who gives advice when someone's obviously just venting... Sometimes I can't help myself.

Congratulations on getting a diagnosis! I don't know about you, but I was so relieved to finally be diagnosed, even with a rotten disease. I was terrified that I'd be dismissed as a psychosomatic case if they couldn't figure out what was wrong with me. I was even a little afraid that I was a psychosomatic case.

One thing that I find difficult about the up-and-down nature of MG is that it makes it hard for people to understand. For example, I would like a handicapped certificate for my car, but I'm sure if I get one I'll get dirty looks. On a day I really can't walk, I'm not going to be out shopping. On a day I can, I need to park close so as not to wear myself out--but getting out of the car, I may walk completely normally.

If you feel like talking about it, I would like to hear your story. What were your first symptoms? How did you finally get a diagnosis?

Abby

Cassie,

I hate MG too. It's very abusive and beats up on us every day.

It's really hard to get out of the anger phase of grief over having a chronic illness because MG gets in the way of what we want to do on a daily basis. I honestly believe there's a constant "grieving process" we go through. Most difficult things in life you can work through. I can't do that with MG and it really ticks me off too. It's the one problem I can't solve and it vexes me!

Abby, There's nothing wrong with giving advice, even if someone is venting. Sometimes it helps to gain perspective, like having some Yin with some Yang. There's a place here for all kinds of input, no matter what it is!

Cassie, I'm assuming you've told your neuro how bad off you are?

Annie

Here is my story: I started having symptoms about three years ago in the summer, I had weakness, fatigue and drooping eye lids and burning in my legs, from knees to hips. I ended up being diagnosed with meuralgia parasthetica. Which is a nerve compression that causes neuropathy in my legs. This was the only diagnosis but didn't really cure my symptoms. But, I did get better. However, I masked symptoms for a long time. I tried to tell my neuro that I was exercising etc. but having weakness etc. For awhile I had symptoms that I thought was heart failure, choking, shortness of breath. I didn't want that diagnosis so I didn't seek treatment, kind of fed up with no answers etc. I would have continued on with this but. . .
In December we went to Disney for 11 days. I had a scooter because I can't walk more than 50 feet without weakness. I would have my 8 year old drive in some of the lines and I would fall asleep. I would also fall into exhaustion and asleep minutes after returning to the room. I had to give up a lot of plans at night. When I returned I was purely exhausted and unable to function. I couldn't work, I ended up in the ER with ptosis. When I went to my neuro he said. . .hmmmmm, I wonder if you have myasthenia gravis. I am a registered nurse and never even considered or thought of that. For a long time I thought I had MS, ALS, Lupus etc, all ruled out. The diagnosis fits all of my symptoms. I am still very bad right now, we went to disney in December of 2010.

My neuro does know how bad I am right now and we are still increasing my Mestinon. He doesn't want to start me on anything else yet. I have an appt with a neuromuscular specialist in the first part of April and I really hope that I will get some better/more complete treatment.

Now, I'm pretty exhausted, long post.

Cassie