Hi Allen,
I too, know how you feel. I'm just 70, and I wasn't prepared to that, two ago when MG hit me... It is now back almost to normal, thanks to proper medication but I'm now dealing with side effects...
And about Ocular MG, Mestinon is not usually effective enough and is best treated with Pred + Mestinon. Did you talk with your neuro about Pred? Of course, you have to bear it...
I hope you'll get over your present condition and spirits!
Maurice.

I just wanted to let you know that you are not alone in feeling angry or frustrated. We all get angry and frustrated especially in the period after our diagnosis. Im no good at posting links but I know the Myasthenia Gravis Association in the uk have something on their site about how the diagnosis affects sufferers and the stages that they go through. Because you are grieving for a life that you feel you have lost.

Im 35 years old and have been medically retired from my job. I was in line for a promotion and a big payrise. Instead I have lost half my income as Im on a pension. I try not to think about the fact that my life has changed beyond all recognition. Because I still can't cope with it or accept it. I try to be grateful for the things I do have, a loving husband and three huge soppy dogs!

No one accepts this illness lying down! Look at the posts where people have done too much and are paying the consequences! We all push ourselves because we can't accept it.

I spent yesterday crying on and off because I was so sad at the impact this illness has had on my husband, that he now has panic attacks. Hes doing better the last two days.I have days when I cry for myself, it usually involves idiot Drs! But thats another story!!

Your very early into MG, so remember its baby steps. And sometimes it will feel like one step forward and two back.

Remember we are here for you and it will slowly get better. At least here we understand, we have walked a mile in your shoes!

Take care Allen, and remember this is normal to feel the way that you are.

Love
Rach

OMG Nick you said it right! The Drs do seem excited when they get an MGer, I remember the first time I went to the hospital here and the staff was so excited, when I was finally able to speak I gave them a piece of my mind, saying we MGers are not science projects and that the first thing they need to do is HELP us then I would be happy to let them learn anything they wanted. Allen, I hope you are feeling better today, I know I am as a good nights rest always helps

Hi Allen,

I too know only too well how you are feeling. I went two years with having ocular symptoms before getting a diagnosis. Everyday I thought I was going blind. I was actually relieved when I was finally diagnosed because I then knew at least I wasn't going blind. I was also very angry that it took so long and was soon diagnosed with general as well. Taking only mestinon, not being able to tolorate other meds and opting not to take pred, I had a thymectomy a year later in 02. Over the next three years I saw small improvements which was very frustrating. By the end of the third year I had about a 70% overall improvement with taking mestinon, which is where I am today. I still have bad days and weeks, but I am so much better compared to how bad I was. And I still get frustrated and angry at times. Please hang in there Allen. It does get easier to accept...it just takes time. In the meantime you know where to come...we are all here for you. Good luck with the IVIG. Take care.

Hugs,
Pat

Good for you, Joan! lol...I can't believe you told them off like that, that's awesome! That's precisely how I was feeling...At first, I felt sorta relieved that finally I was getting the attention I so needed in terms of my health, but then I started to feel a little exploited...lol...The MG specialist I see is a world-renouned expert in MG....She's apparently the best at single fibre EMGs, which is obviously good, because one can rely on her expertese in diagnosis...But she's a bit cold...I've only spoken to her once, and she was like, "We believe you have Myasthenia Gravis. Here's a pamphlet." Me: is it possible that I have something else?" "It is. But I'm pretty confidant it's MG. Good luck." That was the extent of the conversation. Then the assistant neurologist asked me to be part of a study...I felt so overwhelmed...Here I am struggling to keep my job, struggling to even talk, and I don't even get a 5-minute conversation, am being asked to be part of some study 'cause then I can get faster and better treatment--otherwise, I'll simply be started on prednisone without plasma exchange....It was so strange...In the hospital, she wouldn't see me...Wants to see me in a month to assess the benefit of the 4th-set of plasma exchange I've received....One time, I was having so much trouble speaking and eating, my bf forced me to go to her office...She refused to see me..I overheard her saying, "What does she expect to just be seen without an appointment?! I'm not seeing her, I don't have time." So I saw one of her assistants instead, which was alright...but rude much? lol...The emphasis should be on the patient, that's what it's about! Relieving the patient's symptoms so that they can have a better quality of life, not furthering one's carreer, and creating studies that have already been dealt with! lol I understand that good bedside manner isn't a necessity, but it does help...Anyway, I too felt/feel like a science project from their perspective...But what can you do...It's at least better than being completely ignored, and I did get as much help as I could...It's just that the intentions seemed suspect, but that's life, I guess!

Sorry...I sorta hijacked this thread a bit, and it went off-topic a bit...Sorry about that!

I too am a single woman and this disease has absolutely side-lined me. I truly feel defective and wouldn't wish these disease issues on anyone. My mother is 90 and sometimes I have to ask her for help. It sucks to feel so "washed up" when we are still young and longing for connection.

my neurologist probably has the best patient/doctor bedside manner Ive seen in ages. He tells me he treats many MG patients, and when I want to discuss something Ive read about or seen on internet, he will offer his opiniion, never rushes me, constantly reminds me I can call his office any time, he will always return my call with any questions, and he doesnt push anything on me, just explains the benefits of various treatments, and how he feels it will benefit me, asks me if I have any questions, then always reminds me when Im leaving, dont hesitate to call me with any questions I can answer for you.

whats even a little more comforting, is that he understands Im angry, and wants me to feel better and not affect the quality of my life.

I understand where you are coming from, Allen. Polio as a kid, back surgery, shoulder surgery. After forty one years in the Army/Army Reserve plus a full civil service career, I was diagnosed with this stupid disease three months before mandatory age retirement. I probably had it for years but ignored it because I was just too busy with the military. Now, no energy, no night driving, crabby....So, my life as well as taken a definite left turn.

I agree with you. I think with some people if they stay busy enough the MG does not unmask itself. I taught for 18 years and coached softball in the summer for 20 years, so I was constantly working. I quit coaching softball and had a summer free and guess what happened? I was diagnosed with MG and the fun begins.....

Hey hon! I DO know what you mean...Mg sux - it just sux! I DO think you MAY be going through the 5 stages of grief right now. None of us wanted MG. It is horrible. But it could be worse. We have a truly devastating disese, but thanks to modern tech, we won't die from it, like they did in the 60's and 70's.

It just sidetracks all of our life goals and dreams.

There are days when all I do is sit and cry - mourning my "former" life, then I go to the Cancer Care Centers and see little ones with cancer and I feel silly. Do not get me wrong. What we have is awful - no question about it, but it could be much worse!

Rant! Rave! Cuss! Scream! Let it all out! You;ve been dealt a raw deal. You need to let it all out! There is nothing wrong with being angry! If you keep it bottled inside, you'll end up feeling much worse!

You may want to ask your dr about antidepressants - for ME they have been wonderful! They won't make you magically happy, but they will take the edge off!

I was angry for a long, long time! My faith has gotten me through.

It will get better! It really will! You are still in shock. After all, most people don't have a called "incurable" disease, but there is always, always a chance for life long remission - life long! That sounds great to me!

Hang in there!
Love,
ERin