I am new to this site and I am so glad I found it. Reading your journeys has really helped me know I am not alone. I was diagnosed about 4 months ago but have had MG at about a year and a half. I am on 60mg Mestinon 3 times a day, time release Mestinon at night and Imuran 100mg at night as well. I have been on the Imuran about 14 weeks so it may be a little early to tell how much it is helping. I work full time and that is pretty much all I can do. My husband does all the laundry and my daughter does the dishes and buys the groceries. I can cook supper now which I could not do for some time. On a good day I can go to a store if it is not late in the day. And I will say, I am having those days more often than I was thanks to the meds. The meds are helping but I am still weak all the tired all the time. I really can't say that I feel good ever. But I can go to work every day it''s just not easy. I do better when I am at home and can go at my own pace. I just don't know what I should expect. It's all very confusing. I go back to my neurologist soon and I know he will ask as he should, how I'm feeling and it's really hard to explain. I don't want to say I am doing horrible because I know and have read posts of those who are in worse shape than I am but on the other hand I can't really say I ever feel good. I start my day weak and fatigued and end my day more fatigued and somewhere in between the Mestinon helps me get through. Most days I get up and wonder how in the world I am going to do it but I do and it works out. I have ptosis in my left eye and my arms are very weak, especially in the morning when I try to dry my hair. I have a hard time getting through that. My world has gotten very small. Work takes every bit of my energy. I just can't do much of anything else. I know this is bound to be very familiar to those of you reading this. Weekends are reserved for resting up to get through the work week. Are there others of you out there who are are trying to work full time who are going through the same? I also have peripheral neuropathy that I have to be on Topamax for. I have internal tingling in my face and arms mostl. I also have tremor. The Topamax helps keeps this under control. This all started about the same time the MG started. I am very thankful that I can work. I just wonder how long I can keep pushing through like this. I would reallly like to be able to at least do some other things in life. I guess I just don't know what I should expect.

Welcome to this forum!! Am so glad you found this site! Its a great source of support and information for all of us, we're glad to have you here!

MG affects everyone differently, as most autoimmune diseases affects everyone differently too. So don't stop yourself from acknowledging what you are feeling just because others have it much worse. ITs okay to feel horrible, we all do at times!

Find somethings that you love doing, or enjoy doing, and save some time for yourself to do it. Talk to your neurologist, its okay to tell him what you are feeling, be it good or bad, as he may be able to do something about it. Some of the things that I love doing, such as swimming and running, have to be put on hold for me, but I stop thinking about that. I find other things that i love doing such as designing, and start focusing on what I can do. I love taking short walks in the garden, with the breeze its just wonderful. I am still able to bake on some days, and all these just makes me feel useful and so mmuch better!! I try to work full time, just that transport's a problem, so it has to be put on hold as well for now. I still make it to my office occassionally, perhaps 2-3 days a week.

Come and rant here when you need to! Or you can just share your happiness with us when its a great day for you!

hope today is off to a good start and that it ends on a good note! i tried reg mestinon but even though i slowly tapered up to 90 mg tid i had horrible muscle twitching everywhere! my face espec around mouth, arms/ abdominal area so much that i threw up occ. i was given time release mest and have none of these issues. i have tried adding reg mes occ for an extra boost but still can't tolerate it.maybe the feelings you have are related to med. no harm in asking dr. i also can't stand much espec after 3 pm so i make dinner sitting as much as possible and same for doing dishes,hubby brings laundry to me to fold,have a heavy bucket that flip over and sit in garden to weed ,etc.

I have had MG over 20 years now and what you are feeling is normal. I worked full time for as long as I could but pushed to hard and wound up not working at all for a few years. I did go into a drug free remission for 17 years but now my MG is back {along with other issues} I can't take any medications for it because I react to badly to them. Some times I hate complaining because I do see others having it much harder then me but at the same time I know I have trouble and need to tell Dr. all of it. I too try to do everything and get mad when I can't. I made dinner last night and cleaned up afterward and lost my voice, hubby was making fun of me because I was "nasal" it is a small thing but big to me. We can only do so much and as Connie said, make time for yourself and feel free to ask us anything, no matter how small you think it is I bet at least one of us has the same thing.

Thanks so much for the encouragment. I really, really appreciate it!! I find myself looking forward to cooking supper in the evening even though I am so tired and I think you have just explained to me why. I have always enjoyed cooking and now that I am so limited in what I can do it is something to look forward to each day, something to enjoy and help me feel useful. The problem I have been having is with muscle spasms in my feet after I have stood at the stove for a while - I guess from the Mestinon. So I probably need to sit more when I am preparing dinner when I can. I have considered cutting back on my days at work, I just have not given it serious consideration and talked to them at work about it or figured out the financial end of it.

Thanks so much, today is off to a good start! I am off work today. I got a good nights sleep and that always helps. My tingling started in February of 2008. It's called parathesia from Peripheral Neropathy. I found at at that time that I had pre-diabetes. I have lost 62 pounds since then and my blood sugar is much better. I also have nerve damage in my feet and some up my legs. My neurologist says the parathesia and the nerve damage in my feet and legs is from the pre-diabetes. The parathesia came on very suddenly one day in February and the tremor started a couple of days aong with the intense tingling and feelings of pins pricking me from the inside out (Parathesia) All this started at the same time as the symptoms of MG. It all happened at the same time we think I may have had a mini-stroke. I had an episode at work - I nearly collapsed and had a grey area of vision and lost my balance. My balance has been off ever since as well. The topamax has helped with the parathesia, the imbalance, and the tremor. I do get twitching too but I have had that since then as well but I have noticed it more lately since I have been on the Mestinon. Thank you so much for the ideas and encouragement, it means so much! I don't feel as alone in this. I have found those who can relate! Thank you, Thank you!!

Considering the rarity of our disease, I believe we all start out very confused, similar to 1959 when I was hospitalized for polio. I notice a similarity in my reaction and behavior while being treated for both maladies. At first I was frightened, then confused..."Why me?", "Will I get better than I am right now?", "How will my friends and family react?", "Can I still do the things I used to do?"

Finally, I believe acceptance of the current situation, education for those that matter to us and making the decision to move on as best as possible is the best we can do unless we just surrender. I saw someone surrender in the 1950s. They came down with polio and refused to dedicate themselves to physical therapy. They spent the rest of their life in a wheelchair while folks shook their heads and wondered why the person didn't even try to get better.

Hey there! You are going to love this site!
AS for the way you feel, please don't negate how you feel - EVER! This is a really hard disease, and the only way (for me) to get through is to realize that when you are tired - REST! It is great that you are able to work full time, but please don't overdo it! MG isn't something you can push through. It just isn't worth it!
I finally gave up working all together. It wasn't an ez decision, but I needed to rest up and give my body a chance to recoup.
It sounds like you have an amazing support system! That is fabulous! It DOES get better, but it takes time in order to do so.
Tell your neuro EXACTLY how you feel! I keep my list o' symptoms on hand for our appointments - I have a tendency to downplay my symptoms, but that does not help @ all!
Hang in there!
Big hugs!
Erin

Thanks all for the encouragement! I can't tell you how much it means! Hope everyone is getting through their day OK and hope I can be an encouragement to you in the future. I went out to eat today with my son and we went to one other very small store. I have come home now and am tired so I am going take the advice and rest now. It's hard to give in to this thing when you see so much around you that needs to be done but maybe later I will feel like doing a little more. But I am going to focus on the fact that I could go out - That's good! Thanks again. Erin - I hope you will be better very soon!

Hi, CKitty. You'll get a lot of good support here. These guys are great.

First, have you been tested for other things like a B12 deficiency? It's very common in people with autoimmune diseases (pernicious anemia) and for people over age 40 who have begun to lose their stomach acid. Just like we get wrinkles as we grow old and get gray hair, we lose stomach acid too! There are many causes for paresthesias and I hope your doctors did tests to figure out FOR SURE what was causing them.

The problem with MG is that it is NOT predictable! No one here can tell you how you will do with the disease. Resting and taking it easy will make MG less likely to have wide swings in weakness. If you overdo it, it will slam you into your bed really fast!

Working is definitely hard with MG. You can do it but it usually means taking more drugs like you are now.

If you are still not doing well, you have to call your neuro to tell them that. Any changes in MG should prompt a conversation between you and your neuro. And a good neuro will also recommend a good pulmonologist. My pulmonologist is actually the first doctor I go to if I'm worse. She does breathing tests or arterial blood gasses to show if I'm worse or how much worse. Redoing antibody tests are not a reliable indicator of how MG is. And EMG's are really expensive to redo! A clinical exam is good but those breathing tests are a great indicator of things.

I can't have those other nasty MG meds, other than Mestinon, so I have to not work. I absolutely HATE not working. So, if you can work and manage, why not try it? It's up to you if you can do it on a long term basis or not. No one can make that decision but you.

Do you drink coffee? Caffeine is a cholinesterase inhibitor, just like Mestinon. You have to be careful not to have too much of it or you can have an overdose of acetylcholine. But my one cup of coffee in the afternoon really helps. If I go out, no amount of coffee will make me better though. It just kind of gives me an extra boost every day.

I hope you can adjust to living with this silly disease. It's great that your family is pitching in to help. How cool is that?

Annie