I am overwhelmed as well.

There are difference's of opinions out there on surgery. My Doc. doesn't want me to even think about it either. They do it for sure if you have something wrong with thymus but if you don't from what I've read there are mixed feelings on the effectiveness.Some claim it helps, some don't.My first encounter with IVIg it helped tremendously but it only lasted about a week. Now I get it once a week because I can't get up on the high dose of prednisone she wants me to. It lasts anywhere from a day or two to a week but right now it's my only plan of action til I see my doc. again.

I understand your feeeling of 000 what next i got diagnosed at 59 and then everything changed.I have had plasmasphoresesssa and that really helped my neruo said that there is very little differance between cecept and imuran and imuran has less side effects.
Just read keep a daily log for at least 6 months so maybe you can get an idea what might work and what might not I mean rest activity diet ect.
Welcome and good luck

Well
First....that neuro who said you were crazy to consider thymus removal obviously didn't know what he was taking about.

Are you on mestinon.?

I am your age and if your parents are like my mom was they will be in denial and not understand anything. That may not be as bad as you think.

Life does get better. Steroids are better than choking or having breathing difficulties and cellcept is ok too.

Life goes on and as I sit here looking at my husband and grandchild I question if my life isn't really better since MG.

We are here for you and totally understand what you are going through because we stepped on every rock you are stepping on.
Along this long road of having this chronic disease .
Ann

Welcome to the group, although I am so sorry for the reason you are here. Feel free to be yourself and ask any questions. Best wishes. Barbel

I am supised they didn't start you on mestinon as well. It usually helps.I wish I could take the fear away from you, MG is a journey we all walk on our own. It seems no two have the same problems. If your Nero is going the IVIG route this soon he wants to get on top of MG as quickly as possible. I can not promise that you will return to your normal self , but I am convinced you will be better than you now are. Hang in there , we adapt , things will be better, Charlie

I'm sure sorry to read of your symptoms, but welcome to the group. My MG started in my left eye as well. It is normal to feel frightened, the beginning of this journey is the most upsetting. Feel free to share your fears, you are among friends here, we have walked on the same bumpy path. Rest assured, you will improve with time. There is a link at the bottom of the page with comments from many people that have received IVIG, if you browse through that, you will have a good grasp of what to expect. My wife, an organ transplant recipient, has been on Cellcept for 12 years, you do not need to fear it, just learn about it and respect its side effects. It can help you on your path to wellness. When you inform family and friends about your condition, you do not know how they will respond. But you will also find caring and support that will give you peace of mind. To us in the group, you are still a big strong guy. Please keep us updated. Wishing you all the best.

Welcome to the family!! I'm sorry that you are overwhelmed (Same goes for Clark too.) but you've come to the right place. We welcome you with open arms and all the support that you can imagine.

First, it does get better. The issue is your definition of "better". The medications are very scary but then so is the disease itself. Nobody wants to be on these drugs but we do it to keep living and to function. Prednisone isn't nearly as scary as choking and not being able get any air in your lungs. You take the drugs because it is what your body needs. I haven't had to do IVIG yet or plasmapharesis but if I had to I would choose the plasma exchange to take out the bad stuff over putting something into my body. If that didn't work, I'd be all over the IVIG option. The alternative is so much worse.
Imuran vs Cellcept: There is a lot to consider with both meds but if you have ever had any form of skin cancer, Cellcept is a much better option as it has a lower risk of Basil Cell Carcinoma (cancer). Aside from that detail every doctor has their own preferences with regard to what treatments they use. If you were to research something as simple as headaches online you're going to get info on everything from brain tumors, aneurysms, and cancer to something as simple as tension and stress.

You take everyday, one day at a time. Having said that, most snowflakes have to take it hour by hour or even minute by minute to get through each day. Keeping a journal for the first 6 months to a year will answer a lot of questions and give you a feel for what it is possible and help you find any patterns in your energy/strength and weakness/fatigue. Write down all of your questions between visits with your neuro (write it in the journal and take it with you to each appointment) and don't be afraid to ask any of us for help. That's what we are here for.

As far as they Thymectomy goes, I don't believe that your doctor was WAY out of line to oppose it. It has helped a lot of people so keeping an open mind and considering all the options is a smart move.

Sorry for the long response. It seems I'm incapable of brevity. I hope that you get some answers soon. Keep reading DS because if it's happening to you then it has happened to others. Good luck and please keep us posted on your condition and appointments.

Aloha,
Angie

Lots of good comments above. Charlie said it well. I never took meds until this and was scared too. But a year plus later, cellcept seems to be doing its job. I can't run a 5k but I can work, even tho I get exhausted. I had a thymectomy because of a thymoma which could have contributed to MG. I used to take a ton of Mestinon , now just a fraction. I even had a drink last night at a dinner out. Woo hoo! You'll find your moments of achievement too. Just give the treatments time to work, ok?
I've had 2 other neuro's. find a neuromuscular specialist that has MG patients. Some neuro's don't have a clue, really. Stick with this group.... You'll learn a lot, and there are some medical professionals on here too.
Be well,

P.s. refer your family to the MG site, www.myasthenia.org.

Thanks everyone. I'm starting Prednisone after the IVIG. I don't know if they'll keep me on cellcept too.

I'll keep watching and update group on IVIG results.

I've got two weeks worth of lesson plans to write today. Hate leaving my students with a sub, but "them's the breaks!"

I think when we are first diagnosed and going throught the motions and the reality hits, being overwhelmed is an understatement. You are not alone. As much as family will say they understand, they can't. So, as I've said to others before...WE are part of your family now. We know how you are feeling. We UNDERSTAND what you are feeling. We just know. We are here for you to help in any way. We all have our good days and bad. Last week I was really frustrated, vented here and now I feel like I'm back to "normal" again. Good luck with the lesson plans (I teach kindergarten and know how it's more work to be out than to go in sick!). And remember...take it one day at a time.... :)

Welcome. So sorry to hear you are in this predicament.
Talk to your Dr. about Mestinon.

MG is a strange condition. Drugs people take casually like antibiotics or local anesthetics for dental work may do us more harm than drugs we initially find so scary. I was told at one time that the treatment was worse than my disease, but it was not true.

For one, I wasn't seen at my worst, and for another the neuroophthalmologist did not understand what my life had been like. I am grateful for his diagnosis, but for learning what treatment is available and how well you can do, I am indebted to this group both for the encouragement to attempt it, and the recommendation to the doctor who understands and supports my goals.

Thymectomy is one treatment that may help or not, like so many others. There is no one magic cure or we wouldn't be here; but people have gone on to do very well. The drugs are improving and becoming more targeted to the problems, but finding the best solution for an individual will take time.

Hang in there, b.

I agree that sometimes the treatment can be worse than the disease....what to do about that???? I am told if they don't get me treated I will continue to decline as that is the form of the disease I have. I dread anymore trials.....