Camy, I don't have MG but I am a caregiver for my husband who has it. I wish I had a magical potion to send to you that would make your worries and depression go away. You have come to a very good place to get advice, though. You will find the people here very helpful and caring. I hope someone will have some good advice. In the meantime, can you talk to your neurologist and see about a prescription for a mild anti-depressant? You are right, you are to young to be hating your life.

I don't have any great advise as I am new to MG myself. I can tell you that it has helped me that I have told my co workers and friends. They have also been supportive.

I have heard that positive thinking helps but I know it is hard.

Please don't hate yourself. You sound so nice and warm and very loveable.

My daughter was diagnosed at 13 and is now 17. Her life has changed but she has been great at modifying her life but about a year ago she asked her neurologist for medication to help " even her out". Her doctor put her on a low dose of Luvox and it has been very helpful. I would just be honest with your doctor. Say that the prednisone is too much for you. (The doctors have kept my daughter off this even though she is highly antibody positive because of the long term side effects.) Say you need something to help your mood. Tell people you speak with that you have a neuromuscular condition that affects your speech. You have every right to be miserable and frustrated. But you are trying to get help. Just keep asking and things will improve. Your doctor can also give you a prescription for PT so you can work out with a therapist and lose weight. Let us know how you are doing please.

Hello Camy, I soo understand how you feel! It has been 15 months for me as well. I gained 20 kilos and I looked like "Mrs Claus" (according to my kids). Christmas it was on 80mg prednisone every day, February another crisis so we tried 100 mg every other day. I did not look in the mirror at all, but tried to embrace my different look by changing haircolour (blonde did not suit a red/flushed/round face) buying beautiful tunics and a scarf to hide my humpneck.Eating less did not make a difference for me, and excercise was no more than a shuffle to the curb. I have always tried to walk with someone every day, even if only 10 minutes.Weak days always show by droopinjg left side of face/mouth and looks like I had a stroke. It is very hard to look/be so different and not strong. Depressed I have definetly been and had to mourn the loss of my old self. A diary has helped & audio books have helped for distraction (if you can not move much) I do have a couple of friends I can complain to at all times and where I do not have to be positive all the time. Camy, you are young and what I understand great chance of recovery.This forum is excellent for moral support, Keep on reading other people's experiences and take from it what you need and what suits you. All the best.

I understand how you feel. I have gained quite a bit of weight on the Prednisone and I slur more often than I would like. It helped me when my neurologist told me that while I'm on the prednisone attempting to lose weight would be a never ending battle, but when we can safely lower it the weight will come off. I'm not sure why, but to have verification from him that it's not just me being fat and lazy causing the weight gain helped.
I try to deal with a lot of this through humor and I have considered having a couple of shirts made for when I'm in public on my 'bad days'. One I've considered is: I'm not drunk - I have MG (for when I'm slurring and stumbling). The other is No, I'm not winking at you, I have MG...Unless you're cute ;-) (for when my ptosis is bad).
I think trying to remain positive is all well and fine, great even, but in my opinion no one can be positive 100% of the time and everyone has bad days. If your bad days outweigh your good days, then perhaps you could as about an antidepressant. It's nothing to be ashamed of. While our disease is not 'terminal' it is definitely life altering and chronic diseases are known to cause depression. Good luck and I hope you start feeling better soon!

Hi Camy,

You have a diagnosis and seem to have a committed treatment team and the communication skills to reach others. In addition to getting the treatment you need for MG and depression, you could use your skills in other ways. One way that might help you feel some control over your illness would be to educate people about our disease. You could wear a big button that says MG is not contagious and decorate it with as many silly things as you want. You could carry a small camera and take pictures of people that stare at you and tell them it is for a school exhibit on rudeness or for the Myasthenia Gravis Foundation. (Of course pictures couldnt be used without permission and the camera need not even be functional.) Sometimes just thinking about doing things like that, as well as my favorite daydream of throwing bricks through windows of people who are mean, is a release. Imagining can make you smile inside even when you can't outside. You could take on a project--work with small children; they appreciate silliness and are more forthcoming about their feelings and also more accepting. You could exhibit your art or read your poetry (slurs and all). You could wear a button or flaunt a bumper sticker with MGFA.org. I am sure you can think of other things--the point is to begin, which is the hardest thing to do when you are down. Sometimes making a list is helpful--this is what I can do and these are the steps I need to take to start something new. You are already reaching out for answers and suggestions which is a big step.

The picture with this message is for me. It is a reminder of what someone said. When he is dissatisfied with life, he sits in his ferns--he says ferns have been satisfied to be the way they are and have remained relatively unchanged for 350 million years. Sitting in my ferns doesnt work as well as my antidepressant, but the reminder does put some perspective on my difficulties.
b.

Camy,
I'm sorry you are having a hard time. You definitely have come to the right place to find a host of people who intimately understand where you are and what you are experiencing. You have many good suggestions above to think about. I would definitely encourage you to discuss with your neuro when he plans to decrease your prednisone. You are so young and the long term effects are so bad. And talk to us, we will listen and understand.
Cathi

@Kevamoc: Thanks for replying. I have thought about getting on an anti-depreissant but I am already on enough pills for my age so I just choose to stay away from them.

@Samiwells: Thank you.

@Sarah100: Me and my Neuro tried going down on my prednisone but my body didn't tolerate it so I had to up dose it again. I hear working out won't even help if your taking prednisone. Is this true?

@BCCanada: Thanks for the advice. I appreciate it.

@Droopy1 and @bweeds: Thanks you. Sorry so short I am logged on from my phone. I appreciate u for sharing.


@Catnap2: I won't b lowering my prednisone soon since we just up dosed it since things started going bad when we tried to lower it. :(

Camy, just curious, what other medications are you taking for the MG besides prednisone?

@Kevamoc: I am taking Mestinon, Cellcept, & I do three days of ivig every 3 wks.

The PT helped a lot with my daughter's neck pain (but this is not something you complain of). The working out on a regular basis was a return to something "normal" for her - even though it was supervised and at a reduced level. I've always heard that the prednisone can be tapered after the cellcept kicks in ( after a year or so). Hope this may be true for you.