i am unable to work, i havn't been employed almost two years now. labor jobs r not for me as well as some telemarketing jobs. After talking for so long, my speech get slured

Hi, for my first year I was in an out of hospital and intensive care, so my business went bust. About 2 years later I started doing light voluntary work, half a day a week. Now more than 5 years later I am running another business, however I only work about 5 hours a day. The best advice I can give is "be kind to yourself and don't try to do too much too soon". Good luck with everything.
PS I have also used lots of natural therapies with great success

I was off on medical leave for four months the end of 2010. I went back to work in December and found that my job wouldn't give me enough work to even test my ability. I added another job two weeks ago and now I'm getting tested. I'm working part time, about 3-5 hours a day. Twice this week so far I've had problems with my speech slurring, always at the most inopportune moment. If I speak more slowly it helps but I also lose volume. Everytime the slur occurs the sounds I have problems with change so it's not like I can avoid word or letter combinations that give me trouble. Yesterday I had a hard time saying my name, I mean seriously! I've talked to a social worker with my neuro's office. She recommended I keep track of how work and stress affect my symptoms. I wish it were so easy as finding a pattern. There seems to be no pattern. Sometimes I have symptoms when I'm home sitting on the sofa reading. The unpredictability is really getting me down. It's the most frustrating part of this illness so far.

I have been fighting this for almost two years. My ability to work has decreased over that time. I have forced myself hard, but worked less and less because your body just seems to "stop." Since September, I have only worked a few hours a day.

I began an extended medical leave in January 2011. The hope is that my condition will get better with rest. I hope to go back to work within a few months, but who knows!

I do know from experience that continually pushing beyond my limits does not help me. In fact, it makes me much worse.

Hi Cassy,

I have been working fulltime and am a fulltime stufent. I only took a month off of work for my thmectomy surgery. Its hard at times, I have days when I just go home and go straight to sleep, But I am young and refuse to let this disease hold me back.

I would say that the medicine, prednisione and imuran, have helped me in feeling normal.

I am tapering off, so during my lunch I go to my car and take a nap. This helps soooo much because the rest of my smooths by.

I guess it depends on the person, but I have been able to still do my normal activities as if I didnt have MG.

At times, I can hear the slur in my speech or have doouble vision, but thats when I am overworking myself or stressed.

My job is very demanding but I have found that everyone is supportive, and I am good at what I do so I am able to fulfill my work requirements.

Good Luck if you are thinking about going FT, and take it a day at at time.

I returned to work after IVIG a little over a couple weeks ago and in hopes I would be able to do more. I am getting some help from others at work to do leg work and I am able to sit down alot, but I must get up and help out quite a bit still. I would not be able to do my job as I did previously as it involves alot of walking and hands on stuff. My work is pretty understanding of this. As of now, I was even for a few months to get a parking spot closer to my room, and if I need more time I will have to claim Handicapped from DMV. For now though, they are very supportive and as mentioned here, I am very tired at the end of my 8 hour days and I have completed two 40 hour weeks so far. I try to time my MEstinons with my busier times at work to help me out and I eat plenty of snacks. I called in sick today though due to not being able to "get up and go", it is so frustrating. I have to believe things will be getting better...

I have been wondering the same thing--my symptoms started last March and since then i am only able to do 3-6 hr days--and i never know which days i will feel up to going in or at what time --sometimes i feel OK when i wake up but then crash again an hr later ( i should also mention here that i was diagnosed with narcolepsy a few years ago so i'm not sure how much of this fatigue is from that--but prior to MG it was managed with 2 pills/day---now not so much!) We built a new home and moved in the month my symptoms started--so we really need my income now--if it weren't for needing the income i don't think my MG would be so overwhelming mentally, but i keep trying to figure out how i can raise my 3 young children and still go to work to pay the bills--never mind the housework!! Right now my husband is doing the shopping, cleaning, homework, baths, etc. I get the kids off to school in the am and try to get in a couple hrs of work--i have been working 6-7 days/wk to try to get 30 hrs but usually fall short. I know this can't go on and feel very bad for my husband and children--when i am home i'm usually in bed or on the couch and have no voice so sometimes i can't even talk to the children. I went to a support group and most of the people there said they were able to return to work about 2 yrs after they were diagnosed (i guess it usually takes that long to get surgery/meds optimized). Not even sure how i'll pay the bills if i get surgery---thank God for my faith!!

It all depends on the type of work you do.

If your job is manual labor or working in a retail store - on your feet all day - then working can be nearly impossible. If, on the other hand, your job has you chained to a desk, like mine, you may be able to make it. I push myself, probably far beyond what most people will do.

Two years ago, I had colon surgery that required a 12 inch incision in my belly. I had the surgery on Monday morning and was back at my desk on Thursday morning. My colleague just reminded me today that I'm nuts. Perhaps.

For the six years I've had MG...and it's been serious MG, I can tell you...I've cumulatively missed about 4 weeks sick time. I have dragged myself to work, sat at my desk and reclined in my chair just so I could talk to people on the phone.

Don't follow my example. Be less extreme and find a good balance for yourself.

Good luck.

Curt

I have been off work for 8 months now. I worry whether I will ever be able to return to work. My job includes about 70% comuter work and 30% lifting boxes weighing about 30-40 pounds. With the blurry vision and difficuly keeping my eyes focused it seems that the computer work is out of the question. As far as the lifting I know that I will never be able to do that again.

As Judieb said, don't push yourself because all it does is make you worse. Only do what you feel comfortable doing and no more. I tried pushing myself and paid the price for several days after.

Its been 4 weeks now. I am still getting very tired. My speech gets so bad and my mouth is so tired. My arms are very weak they are hard to get up above my head. I cant even put my hair up It takes everything i have before they fall down.My Job I am a sr. machine operator. I do a lot of walking up and down stairs and make sure the line and everyone is working. I have not done that much of my job, only a few times. I have been seating a lot and I get very tired. My doctor up my Prednisone up to 55mg aday, also Imuran 50mg aday and mestinon 60mg every 5hours. i was taking the IVIG treatment but last month up blood pressure went up to 170 and had to stop. The doctor does not want to do that right now. I have 2 more weeks on part time and then we are going to have to come up with a plan to stay on part time or go full time. I am also have problems eating. I have been chocking more when i eat again.

I just dont know what to do anymore.

Cassynchris, I know your frustration and feeling of hopelessness. When I went to the doctor last June I was in very serious condition. I could barely breath. I would start coughing so bad that I would choke. I was so weak that my husband had to practically carry me into the doctor's office. I saw his physician's assistant and she told me I had asthma.

As I continued to get worse she kept telling me I had asthma. I insisted on seeing the doctor which was the first time I was taken seriously. After one look at me and my husband telling him what was going on with me he immediately suspected MG and sent me to a neurologist.

Back to your frustration. I too, feel that way a lot of times. You begin to wonder if you will ever get better. The weakness, the difficulty breathing, the muscle cramps, the trouble talking, the severe pounding in my chest, the chest pains - all are totally overwhelming. But, Cassynchris, we just have to believe that our doctors will in time find the right combination of medication to stabilize our condition so that we can resume some semblance of a normal life. If we don't believe that then we will go nuts.

One of the things that has driving me nuts is when I experience something (such as muscle cramps) I didn't know if it was because of MG or if it was something else causing it. I just discovered this site today and already, from reading many of the comments, I now know that many of them are things that others have experienced also. This site is truly a blessing for me and I hope that it is for you also.

I read some of the other comments that others have written on this site and they give me hope. Heck, some of them are even back to work and some of them are exercising on a regular basis. My neurologist has told me that this is "going to be a long haul" so at least I know not to expect quick relief like I would get if I just had a cold or something.

I know it is hard but try to keep a stiff upper lip and think about the things you want to do once your doctor gets you stabilized.

Cassy, you have probably said somewhere before but my memory.....have you had plasmapheresis before?

Alone - I'm so glad you found the site. It is so important to have people to talk to who understand.
Cathi

No I have never had the plasmapheresis done. The Doctors told me that I don't need that done not unless I start have breathing problems. My breathing is o.k. I get winded but thats about it. Now with my blood pressure going up to 170 the last time I had IVIG done there not going to do that unless I start have breathing problems. I have been so upset about the whole thing. I have been ok with everything but now with my job and money and lets say everything, just been upset and I know that does not help. Thanks all for hearing what I have to say.

My neuro uses IVIG and plasmapheresis to increase strength, not just in cases of difficulty breathing. I had plasmapheresis before my thymectomy in August just to increase my strength as much as possible. It worked really well and minimized my symptoms. I know some people who have refractory symptoms use plasmapheresis as treatment much like IVIG. My neuro did mention this for me but wanted to try IVIG first.

I have been working full time since I was diagnosed in 2007. I had a thymoma/thymectomy removal and radiation. The symptoms were intermittent and you never know what to expect. In the last 6 months I have gotten worse - fingers don't work, can't lift arms, can't talk (either tongue does not work or I talk through my nose), double vision was so bad I had to wear an eye patch and glasses on top of it for the other eye. I was lucky ( ??) up to this point because our company is closing and there has not been all that much work to do for the last year. I sit at a desk and don't have to talk much but the double vision is the biggest problem (I am an accountant). My worry now is I will be out of a job in a few months and there is no way I can get a "real job". I am discussing filing for disability before I lose my benefits, but I was told they give people with MG a hard time because of the intermittent problems.