Originally Posted by sugrkiss

So my symptoms started with my lips, which at the time I blew off due to dental work I was having done...soon after moved to my arms, which I chalked up to possible muscular dystrophy thought to have inherited from my mother, and exacerbated by my 8 month pregnant body. July 3rd 2009 my 3rd son was born, and within 3 days I could hardly move. My wonderful nurologist saw me on day 4 and immediately prescribed Mestinon just in case, and ordered tons of blood work. The first time I took the meds I felt like Superman, I could not believe the meds worked so fast!!! CT showed Thymoma, and immediately scheduled surgery "to get it over with" (I am seriously shortening this because my fingers are dying)...fast forward surgery was done on Aug. 19 and I felt wonderful for two weeks (my MG..) I was amazed by how well I felt especially considering a slight sunburn had knocked me down for two days prior to my surgery...For the past three days my MG has gotten so bad I can barely pick up my son ( 120mg 4x daily) and I don't know what to do...I'm not sure whether I should start the Prednisone when I will hopefully start feeling better due to the surgery soon, and I am also supposed to return from my Maternity leave in two weeks!!! I should add that even with the Mestinon making me feel better I can't do a darn thing but sit on the couch, and on days that I shower, forget even brushing my teeth. Without the Mestinon I would be in hoslpital, with it I can feel ok just sitting around.

How soon did it take for your symptoms to lessen?
Is it worth it to take the Prednisone?
How many of you work?

Thank you so much for all your help...

Jessica

Originally Posted by AnnieB3

Jessica, Sometimes I'm like a splash of cold water in the face - not necessarily a welcome thing. I hope you don't get upset by what I'm going to say. I say it only because doctors often don't and you deserve to know as much as you can about this illness and the drugs used to treat it.

Did someone tell you that a thymectomy is a guarantee of remission? It's not. It may help but no one can tell you if and when it will. I'm sorry to be so blunt. Your doctor should've been. Yes, some people do feel better or even go into remission but there are more who don't.

Doctors have this little algorithm for MG patients. If they are "ok," patients get Mestinon. More symptoms and they get Mestinon and Prednisone. If they don't get better, it's immunosuppressants like Imuran or Cellcept. If still not better, then they get expensive IVIG or potentially dangerous plasmapheresis. It all has to do with cost and potential harm. You have the right, at any point, to deny any treatment they offer. Or to push for others they haven't.

If you have MG really bad, which it sounds like you do, then considering some kind of immunosuppression is a good idea. But does it "have to" be Pred first? No. You can refuse any treatment. Pred can be particularly bad in the long run. Since I don't know how much you know, I'll just put this out there. Pred can cause glaucoma, diabetes, increased risk of infection, loss of bone density, reduction and elimination of the gel coating of the stomach, bleeds and lots of other complications from it or the things that happen due to it. Example, Pred-induced diabetes can cause all kinds of secondary issues, including neuropathy. Pred is a "one thing leads to another" drug and should not be doled out like it's candy. It is a serious drug with serious long-term effects. The hardest part about taking it is the inability for most people to wean off of it. What that can cause is an adrenal crisis. When you take Pred, your adrenals don't feel like they need to "work" anymore. The Pred has taken over. Then when you go off of Pred, or even when you reduce the dose, the adrenals don't want to go back to work. You end up with symptoms of adrenal insufficiency and can go into an adrenal crisis.

So that's my Pred lecture. I know it's often necessary, especially in some lupus patients, but it is a nasty drug. You should truly think about what it means to take it. And since you have kids, the germs they bring home could end up making you VERY sick due to immunosuppression. And any infection also makes MG worse.

No one can tell you whether you should work or not. You are still getting used to this disease and may not realize how bad it can get. You almost sound right now like you are on the verge of an MG crisis. If you push too hard, you WILL have one. That can mean a week or more in the hospital. Then who will take care of things at home? And it can take a long time to recover afterwards.

Do you have short term or long term disability insurance coverage at work? Can you get that? That gives you options of what you can do.

If you don't have a pulmonologist yet, get one. They work TOGETHER with neuros when someone with MG has a crisis. You should get your breathing #'s checked. When I get worse, my pulmy checks my MIP and MEP and Total Lung Capacity. You absolutely need a good pulmonologist to help manage this disease. A neuro does not know as much as a pulmy does. And a pulmy can do things like an arterial blood gas if you are worse. And then they can call your neuro and talk about what to do!!! Doctors don't like to work together but they CAN do it.

Having MG is a full time job. You may need to rethink almost everything about how you do things. Like having chairs everywhere so you don't have to stand and can conserve energy. Like calling in family and friends for help.

Other things you need to know about MG is that drugs, like the ones you have during a dental appt., can make MG worse. There was a recent post about all that. Being in the sun too. Infections, lack of sleep, etc. can all make it worse. Go to www.myasthenia.org or www.mdausa.org for more info.

When you take an antibiotic, make sure you get some GOOD acidophilus to take during and after. That should help.

It is not easy coming to terms with how MG changes your body and life. I understand wanting to think everything will go about as normal but that's just not realistic. I tried to work and be superwoman for a couple years but realized I couldn't balance work and my health. I still wanted to have a life that had some quality in it. It's debatable if I do.

I'm sorry if I'm being a downer. But doctors do not talk about all this stuff. They don't have time. You can live a good life with MG but not if you continue to do all the things you used to do. Something is going to give and you don't want it to be the MG. It pushes back.

Have a good conversation with your family, extended family and friends. And your doctor. Do what is right for YOU. If that's working, then make accommodations to make it all better. I hope you can figure out the best balance for you and your family. Good luck.

Annie