New to Forum and Other Things
 

Hello all:

I was diagnosed with MG about 6 years ago and have treated it conservatively with Mestinon. During this entire time, I have been able to maintain my full time career. In the last year, I changed employers and the new position, while exciting, is way too much work and so very stressful. I've been here a year now. In April, my body crashed hard and I ended up in the hospital for 5 days. I've fully recovered from that episode but I am just worn out all the time. Mondays are my highest energy days and I accomplish so much. Today is Wednesday and I'm already feeling tired. By the time I get home from work, I am so exhausted and on the weekends all I do is rest and sleep.

So I wonder if anyone else here works full time? If so, how do you manage it? I want to go to part time but I don't know how to talk to my boss since I've not even told him I have MG in the first place and I've been here for a year. I've also thought about quitting work altogether. I really struggle through my day and am so tired by the end of the day it is all I can do to get home. I have 2 teenage boys and I find myself pushing myself so I can continue to meet their needs. I drink tons of caffeine in hopes that it will give me that boost I need to push through another day. I can't keep going like this. Something has to give. Is disability even an option?

I know how you feel - I work full time also and have had mg for about 11 years. However, I do work in an office behind a desk which helps since I am not having to move around a lot during the day. However, the stress can sometimes get to me also.

I took a 6 week short term disability leave last fall because I was so weak and exhausted. That really helped and I've been having weekly IVIG for about 6 months. I am finally able to stretch the IVIG to every 2 weeks and I'm feeling a lot stronger.

It tends to be a day by day, week by week, month by month process. My employer does know about my mg and they have been great, which I am thankful for.

As far as the disability, I know there are quite a few people on this forum who are on disability and can better advise you on that.

Good luck and hang in there!

Hi, and welcome. I don't know your situation, so the following might not be appropriate for you, but teenage boys are the nation's greatest untapped source of energy (I've got a bunch of teenagers myself). They can cook and clean and do laundry. If one of them has a license, they can shop and do errands. If you're thinking of quitting work, then it might be a win-win situation to pay them to work for you: that way you keep most of your salary, you get a rest, they make money, and they learn important skills.

Like I say, this might be completely useless advice for your situation...it's working so beautifully for me this summer, though. My daughter, just out of high school, is doing the cooking and cleaning, and helping me take care of the little ones. I am working from home part-time and using the money to pay her college tuition. I'm getting a rest, and things aren't falling apart around here. What I will do when fall comes and she goes to college, I'm trying not to think about!

Abby

Assuming that they are healthy:)

Thank you all for your suggestions. I am having a sleep study done next week to see if I'm getting recuperative sleep - which I'm sure all of you know is critical for MG patients. I will also speak to an attorney today about disability. I'm just tapped out and near tears most days. What a frustrating disease - and one that is difficult to explain to people who have never heard of it (including my employer). I'm trying to figure out the best way to tell him without it sounding like I'm trying to get away with doing less work.

It's possible that you need to adjust your dosage (and/or timing) of Mestinon and/or start on another drug. Certainly stress - a new job, and teenaged kids - will not help you any!

Have you ever been tested for Celiac Disease? It's possible that you may have a problem with gluten. Many people with MG find that a gluten-free diet can do wonders for their energy (I had a CD diagnosis for 2 years before my MG diagnosis).

Here's a link to a post with more information about Celiac Disease/Gluten Sensitivity:
http://neurotalk.psychcentral.com/post8767-2.html

If you are comfortable with your boss/employer, then by all means bring up the subject to them. It is possible that there may be another position in the company that you would be able to do that wouldn't tire you out as much. Part-time might be a good option, as you wouldn't get as tired throughout the day. I don't know where you work, but is it possible to do any of the work from home? That might make it easier for you as well, and as long as you are being productive, your employer would probably be willing to let you do a trial period to see how it goes.

It is so vitally important that you conserve your energy as much as possible; otherwise, you could seriously damage your long-term health! But I'm guessing you already knew that..... ;)

Hi, and welcome, WOIK. That made me giggle. Woik sounds like work with an accent. ;) Do you have an informal name we can call you.

Does your employer have short term or long term disability? Not that taking a break would be a good answer.

I can't work. I found out early on (10 years ago) that I can't push my body that hard. I even tried part time consulting work but I couldn't manage even that. Unlike some other people I know, I can't take the drugs like IVIG or Cellcept that might make working feasible. Drugs bring with them some pretty awful side effects, so it's a really tough decision to make.

Maybe it would help to write down some "what ifs." What if you applied for social security disability? Do you know the amount you would get from them if you got approved? What if you don't get approved for two years, like it happened with me? What if you can tolerate an added drug at a low dose, like Imuran, and can still work? Or the big MG what if, what if you push too hard and end up somewhere unable to move or breathe?!

I know how hard this is to face. I couldn't have done so without my family. And friends. Maybe sit down and discuss this with them.

How do you describe MG? Most people "get" how cars need gasoline to "go." It's the same with MG. Most normal people have a full tank of acetylcholine (ah-seat-ill-co-lean) every day. Tell them that acetylcholine is everyone's muscle gas. Normal people have a full tank of it every day. People with MG only have about 1/3 of a tank. And our muscle gas runs out faster. So, the more we do, the less we have. It could run out at any time during a given day, and our muscles won't "go" anymore.

Anyone else have a good analogy or way to describe this? It's really hard for some people to get. I lost a friend because she simply couldn't get her mind around it.

Because you have MG, it is possible to have other autoimmune diseases. Do you get your thyroid checked yearly? B12 level? It's easy to check for those and celiac disease. It's always a good idea to make sure there isn't something else making your MG worse.

I hope you can figure out what is best for you to do. I'm sorry you ended up in the hospital. Be careful! It's so darn hot down there and that makes MG much worse, as you know. Good luck.

Annie

Welcome.

Good luck with your sleep study. A lot of people who get diagnosed and get a CPAP machine do really well if they get adjusted to it.

Well it sounds like you did a lot better with your former employer, so, well, in my opinion you seem to want to keep a job, but you need some accomodation at this new place. Or to find a place that is more like your previous one. I know you said you want to quit but it just seemed like you would feel better about yourself if you kept a job, just as long as you weren't completely tired all the rest of the time. Just my opinion based on what I read.

Disability is probably an option but takes a while to and a lot of effort to fight, they try to deny it. And probably doesn't pay that much.

I can understand the feeling of confusion and frustration... I feel that way regarding choices with how to spend my time and energy versus the need to have more income.

Thank you all for your support. I had my sleep study and they did not put the CPAP on me overnight, which I suppose means I don't stop breathing at night, but I do have a follow up with my sleep study doctor for the results. Since it is imperative MG patients receive good sleep, I'm hoping he'll have some suggestions.

Right now my only medication is Mestinon. If I don't take it, I'm practically useless. If I do take it, I'm ready to vomit at any given moment. I've tried it with food, with milk, before bed, etc., and it doesn't seem to make any difference when I take it. Doc increased my dosage since my disease seems to be progressing, and it helps with the fatigue, but the side effects are awful, as many of you know.

I work full time - 40 hours a week. Saturday I slept until 1:00 p.m. I woke up at 8:00 a.m. to potty, hubby asked how did I sleep and I told him, "I'm going back to bed - just needed to potty." I didn't think I'd sleep until 1:00 p.m., but clearly I needed it. Sad thing is - it was my son's 17th birthday and I missed half of it. I push all week to work and then the weekends all I do is sleep. Sunday I had so many obligations with the kids I couldn't "sleep in," so today, my Monday when I'm usually feeling the best during the week, I'm dragging already.

I have no idea how to tell my boss about my disease. I'm so worried it will sound like a cop-out. He knows I've had a ton of doctor appointments lately, but he's so removed from his staff's personal lives that I don't think he connects whether the appointments are for me or if I'm shuffling my kids around for their appointments. He's very unapproachable in that regard.

I don't normally whine or complain but I really feel at my end and am not sure where to turn or how to proceed.

Isn't there a drug that is sometimes prescribed along with Mestinon to reduce nausea and other GI side-effects? I think I remember reading that, but I can't dig it up. Does anyone know? It sounds like what you need.

Abby

you need to tell your boss!! that is a must! i am at this very point. i think this week might be my last week at work because i can't seem to get caught up with my fatigue. i tried hiding it tho and everytime my boss asked me how i was i just said okay until the other day i just broke down. said that i was not okay...that i wish if i saw it enough that it will be true but that at this point i am not sure if i can do my job to the best of my ability and that really bothers me. We had a long talk...he told me that i need to take care of myself now because i am going to look back and wish that i would have not tried to fight this disease so hard and learn to just deal with the limitations and change things and who knows if i take time off if maybe in a month or so id be able to come back to normal because i took the time off...you need to listen to your body and take care of yourself....hard as it is...hope all works out with you..and you get some rest and feeling better!

How much Mestinon are you taking per dose, and how often? My understanding is that we need to find a dose that doesn't make us feel sick. It's possible that instead of needing to increase the amount that you are taking per dose that you need, instead, to change the INTERVAL at which you take it. It may also be possible that you need to increase the dosage by less than what your doctor gave you - perhaps you only need 15 or 30mg more per dose rather than 60mg per dose. It's an extremely delicate balance.....

My case is a bit unusual because I didn't test "positive" on any of the tests (one result was "iffy"), but my doctor was willing to let me do a medication trial. She had me start with 30mg once a day for 3 days, then 60mg for 3 days, then 90mg for 3 days, then 120mg for 3 days. She said that if I took too much, I would know it.

Sure enough, at 90mg I could tell a real difference, but at 120mg, I felt queasy, I started drooling excessively, and I just felt lousy in general. Once we had the correct dosage determined, we moved on to figuring out what "timing" was right. For me, it worked out to be 90mg every 4 hours while awake, and then at night I take 1 timed-release capsule.

If you are feeling that bad on the new prescription of Mestinon, chances are your dosage is too high - what you are experiencing may be symptoms of an "overdose". If you've ever sprayed an animal with too much flea spray, you've seen the same type of overdose - particularly the drooling!

Talk to your doctor and see what he/she thinks, but I'd be willing to bet that you can tweak your dosage/timing schedule to find something that works best for you. It may take a couple of weeks to find the "best fit", but it sure would be better than feeling so sick all the time! :hug:

I am a high school teacher and teach full time. I use the summer to RELAX. I am VERY tired after a day of teaching standing on my feet without airconditioning, sometimes in 100 degree heat. I have fans blowing on me. At the end of the day when it is really hot I have to come home and take a nap. Due to teaching and being worn out, my husband does the majority of the household chores and I run the kids around to their activities.

Deciding whether or not to tell your boss is tricky. Would your boss treat you less favorably if he knew? Would he be sympathetic? He may not "want" to hear about it.

Do you have disability through work? Check into that.

Ask your neurologist if he thinks you would be qualified for social security disability, which is different.

The last thing you want is to end up in the hospital in a crisis. You sound like you are headed in that direction. You can only push MG just so far. And those periods of sleeping are a warning sign. Are you having any other issues? Sudden shortness of breath? Inability to take a breath in? Take those things very seriously.

I hope you can figure out what works for you. It's not an easy decision to make. It took me over two years of "denial" before I gave in.

Take care,

Annie