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

I had a thymectomy 13 months ago and still have symptoms. I work full time, I am a high school math teacher. I returned to work 5 - 6 weeks after my surgery. I greatly benefitted from having this summer off.

I do not take prednisone. I took it before my surgery for a week and then once later for a week when my eye got real bad. I take Mestinon 4 - 5 times a day. I was at 60 mg, then up to 90 mg and am now back down to 60 mg. I also take 500 mg of CellCept twice a day.

I nap 2 to 3 times a week, those help.

My symptoms have not gone away, but have gotten better. Sometimes too much Mestinon can worsen your symptoms.

Hi Jessica,

Scary times. I hope you have a good neuro and family doctor to help you through the process of getting this under control. This community is great if you have any questions from someone who's going through the same thing as you or if you just need to rant. We all understand here Just remember, we're not doctors (at least I'm not) any advice should always be confirmed with your primary care physician.

My symptoms started getting better immediately after my thymectomy (my ptsosis almost completely went away and hasn't returned), but... I still have symptoms and they're being controlled with Mestinon. This is a year and a half after my thymectomy. The symptoms continue to get better over time. They should have told you, thymectomy can take 3 to 5 years for full effect (that is as much as it is going to do for you can take up to 5 years to complete) It may put you into remission, it may not, it may lessen your symptoms significantly, a little bit or not at all. We're all unique in the way that this disease treats our bodies and how much we react to the treatments.

I don't take pred currently so cannot answer that question. I try hard to avoid steroids personally, but if they're needed they're needed. You are on a large dose of Mestinon. Did they start you that high or did you work your way up to 120 x 4? I started 60 x 3 and am at 60-90 x3 depending on how I'm feeling that day. If you're taking too much it can cause MG like symptoms. Your problems getting out of the couch could be linked to taking too much Mestinon. That's something you may wish to discuss with your neuro... is the dose right for you?

I work. Currently at the office, but with flu season coming up I'm going to be working remotely (from home) starting in a few weeks. My work can easily be done this way and my employer has been absolutely amazing with their support while I've been getting better.

Best of luck.

Brian.

Talk to your Dr. you may be taking to much medication. My MG also came about during my pregnancy and after my thymectomy I was feeling better and then crashed.. I weaned off my meds and went into a drug free remission for 17 years. I was not able to return to work at the time so my maternity leave turned into long term disability. Once in full remission I took it easy for fear of it returning, now that it is back I do not work nor do I take meds, I try to control it with rest. Everyone is different so as I said, speak with your Dr. I wish you luck and hope you go into remission soon

Welcome Sugrkiss,

I'm so sorry about your ordeal...I had a thymoma too, and just had it removed on the 14th of July...The symptoms have stuck around, but my doc. says that's pretty common and can take 5-years to go away...It's harder when there's a thymoma for remission to occur...I'm not sure why, but the MG tends to stick around for longer...But even people with thymoma can get back on track health-wise, so keep the hope flame burning...

My symptoms are mainly in the tongue and palate...But I just recently finished plasmapheresis, and I haven't felt this great strength-wise in many, many months....I don't know what it was about this particular exchange, but I haven't had one incidence of slurred/nasal speech for a while now...My voice and eating are absolutely normal...My doc. is giving me IViG tomorrow to prolonge the positive effects of the plasma exchange...I'm feeling pretty hopeful that my symptoms will go away...I'm also taking 80 mgs of prednisone and a bunch of mestinon...So you'll prolly have to take meds. at least for a while to get things back on track...

You mentioned that your mom has Myotonic Muscular dystrophy (I'm guessing that's the type)...I've read some things about that problem in relation to thymoma...People with this problem have been found to have thymoma more often than the rest of the population...Did they really rule out the fact that you may have it? There's something about the deletion that causes people to get tumours more easilly...

You also mentioned that you were pregnant while you had the thymoma...I don't want to scare you, but are you able to ask your doc. about this particular combination? For some reason, pregnancy can exascerbate a thymoma, i.e. make it grow much more rapidly and *possibly* spread...Please ask your doc. about this, but don't panic...Thymoma is so rare, and maybe he doesn't know about that one...There have only been something like 8 cases of thymoma and pregnancy that they know about...

I hope that you get to feeling better soon, and congratulations on your baby!

Nicky

Hi Jessica,

I work fulltime and take prednisone. I started taking Pred almost 2 years ago and felt the benefit within a couple of weeks. At first I was taking 60 mg daily, now I'm down to 40 mg every second day. There are a lot of side effects to consider (I almost immediately swelled up so it looked like I had Cushings Syndrome, I lost a lot of hair and gained a lot of weight, among other things I'm sure I'm forgetting right now). I'm still happy with my decision to take pred as I was SO helpless before taking it. I haven't had a thymectomy as my CT scan was normal.

I'm a learning support teacher and lead a farily "normal" life - today for example I cleaned my entire house (vacuumed, swept, worked in the garden, did some laundry and dishes, washed all the windows and mirrors) then walked a mile to a friends for a meal. My job can be physically demanding, I play some sports with the kids and occasionally go swimming etc. I usually crash pretty early when I get home form school and recuperate on Saturday. I feel pretty lucky that I'm able to do as much as I can!

I hope you get the answers you need to make your mind up. Take care,
~Kathy

Hi Jessica,
You have come to a great place for information and support! Everyone here is wonderful! I work full time. It's not easy. I take 60 mg of mestinon three times a day, time release mestinon at night, 150 mg of Imuran once a day. I also have paresthesia from peripheral neuropathy and tremor so I take topamax-100mg twice a day. I am trying to avoid steroids if I can. I have been on the Imuran about 4 months and I think it is helping. On the days when I work all my energy goes to work. When I get home I do have the energy to cook supper now but nothing else. I don't grocery shop or do laundry, there's no energy for that during the week. If I plan things right, on my day off I can go to a store but only if I plan to go early in the day and rest when I get home before I try to do other things. I can't do what I could do before and many here have and are continuing to help me through that. The thing I have had to learn is to rest. I need more sleep than I used to and I have to rest during the day. I have to take a nap sometimes during my lunch hour. I have to go up and down stairs during the day at work and often I have to rest before I can go back up the stairs to my office. Again, you have found a great place!
Take Care and I hope you are feeling better soon!

Ckitty

Jessica, These guys have given you some good info and support. I'm a bit worn out today or I'd launch into my "the dangers of Pred" monologue. But to answer your questions . . . no, I don't work. Mestinon, the only drug I'm on, kicked in within 20 minutes. Mestinon only helps with symptoms and not the underlying autoimmune process though.

And nothing gets rid of weakness altogether. This is not an autoimmune disease that usually goes away, although some people do get remission.

I hope you can figure this all out with your neuro. And stay out of the sun!!! Heat makes MG exponentially worse.

Annie

I am meeting my Neuro on Monday, and was anxious to have input on some of my questions before having to make decisions about my near future.
I noticed a lot of you thought I may be taking too much Mestinon....I did work up to this amount, I started at 60mg X3 , then 90mg X3 then 120mg X3, now I'm up to 4x. I would love it if I could lower my dose, but I'm lucky some days to make it to four hours before I need my next dose. According to my Neuro, my immune system came rushing back after I gave birth, thus exacerbating my symptoms, and possibly still doing so....Also, pretty much every muscle I can think of is very affected .... throat, mouth, jaw, face, breathing, arms, legs, fingers, back...and when I wake up I can hardly roll myself out of bed to get up and barely swallow my meds...occasionally the water refuses to go down and instead goes up Also, even on my good days, when I actually feel human, I can not go more than a few minutes of anything, before those muscles are totally worn out. I am doing ok with trying to manage, but my biggest question at this point is, How normal can I expect my life to be without Prednisone, and since I had the surgery, is it worth all of the side effects to start taking, when hopefully the surgery will start taking effect soon. I am schedued to start back to work in two weeks, but with everything that has happened (I have only had two months to deal with this disease so far) am I pushing myself too hard?

For example, I felt pretty great following my surgery, less the pain from the surgery itself, and then wham I get a womanly infection from the darn antibiotics, and feel like a total cripple, worried I'm going into crisis...So I guess the question I really need help with is this....

Should I go back to work at any cost, since I love my job and get to work from home (ie: take prednisone if working and taking care of my kids is too hard with the Mestinon alone)
or should I stay out for a few more months and let the surgery work it's magic, and pray they hold my job and don't cancel my ins. (I can get Cobra if they do that...) I should add that I work from home, and also have 2 children in pre-school, and an infant home with me, whether I work or not, I have to take them to school and take care of the baby all day. My hubby is in full time school and has to miss days when I can't manage the children...

What would you do?

Again thank you all for your help, I am unbelievably thankfull I found this site, and can't wait to get to know you.

Jessica

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