I was diagnosed in April and like you I am not working right now, with no idea when/if I can return to work and in what capacity. I am a nurse manager in a very large area (size of Washington State) and need to drive long distances, which is currently not an option.
That doesn't answer your questions, and I doubt if anybody has the answers you are looking for. You don't mention what treatments you are on, I assume you are on something like Imuran or Cellcept. Unfortunately response to these drugs is unpredictable, some do well in a couple of months, some take a year (or more), others don't really improve at all and have to try other treatments. What I see in a lot of postings on FB from experienced patients and in different studies, is that things tend to be unstable for 3-5 years. But again all MG patients are different, and the different types of MG play a role as well.
I think the next couple of months are going to have to tell you what your short term outlook is going to be, but you need to prepare yourself that your old high stress, demanding job may not be a good fit for you any longer. It is a nasty reality, which I am struggling with as well.
Very big hug from Canada

How is your mg right now?

Hi Mairjke and Keepsonablessin, thanks for the response. I started my treatement plan on Sept 2, 2016 for my MG. I started having symptoms in May of 2015 and received multiple misdiagnosis, therefore my symptoms became progressively worst.

I am currently taking 10 mg of prednisone daily and 90 mg of mestinon 4 days a day. My double vision and droopy eye lid is slowly clearing up but comes back when my mestinon wears off. I will be starting 20 mg of prednisone on Monday 10/31/2016 and Imuran in two weeks. My Thymus Gland was normal, so the neuro is trying to treat me with medication. I still walk with a limp, move very slow and have constant muscle pain and weakness in the trunk of my body, pain in my lower back, thighs and buttock area when I walk too far or stand too long. I am currently still walking with a cane for balance and once the mestinon wears off I have trouble walking up the stairs in my home and start to becom weak again. I am progressing but it seems to be a slow process.

Maybe ask if you can take the Mestinon more frequently, I currently take 120 mg every 4 hours while awake. It only works for a couple of hours, leaving you with obvious periods during which you have none circulating in your body, so you are weak. I know of patients who take a lower dose, but every 2 1/2 to 3 hours

Hi Quen1966!
Do you reside in U.S.A? Canada? Or other? I am Canadian and work for the City of Toronto.... the reason I ask is because if you do work for Provincial, Federal or City... it's a little easier to transfer to another position. Especially if you are Unionized. You can still keep a good paying position while requesting to customize it to your present health standards. I have been on Sick Leave since July 2016 when this all started. I really needed to get myself, my Medical Team, my family...but mainly my emotional self settled before thinking of work. I am glad I did this. Be Kind to Yourself is usually what I express to my staff.... so I had to apply it to myself! I had quite unique responsibilities at work so I ended up re-negotiating my duties, work hours and pay... I didn't want to miss the Fund Raising Events that we do... they mean a lot to me. October is United Way Fundraising for all our non-profit organizations. November is fundraising for Sick Kids Hospital in Toronto..... so basically.... if you can negotiate a new job duty for your position, that would be the best. If not.... I think its important to be selective in what you want to do. Another thing I did... knowing that my body is limited at this point. I created a new volunteer position. It was for an Internship for my position. I recruited an intern so I now have an "Assistant". Yup. They run to and fro for me when I cannot. They are awesome. And they now act as an accountable person who is with me at most of my work hours. Just in case I have any emergencies. They are a University of Toronto student.... so....not too shabby a deal! And in case I can no longer do what I do.... the Organization knows that they will always have someone in this position to continue the work. I hope that you will have the ability to do so too! And I hope that you will be able to work at something that will not be as taxing but enjoyable.
Take care!
Abby
P.S. Don't eat too much candies! It's Halloween here! Trick or Treat to all!

Thanks AbegailS, I reside in the U.S. and work for the state. Iam in the UAW union and will certainly be looking into having my physician request accommodations that would make my work environment more customized to meet my current health needs. There are positions that don't require constant field work they may be more accommodating with the state. Thanks for the insight it really gives me hope for my future career goals. I would really like to stay with the state as it pays well and I've been there for a few years. Thanks for responding to my post.

I worked for many years in medical lab research positions - a lot of stress, walking, temperature extremes and lifting. When I got sick with whatever this is (plus GI and other malabsorption issues) I changed to an academic assistant role at the same university. I now have an office and only walk a few hundred steps a day, if necessary. I talk to students, in person and on the phone, take minutes at meeting and do a lot of emails and data analysis plus manage a website. I am now in a union and feel a little more protected. I'm off to neuro #3 tomorrow hoping for a firm diagnosis, which could certainly help if I need to go on long term disability.

There are lots of jobs needing organized people and those of us with health issues certainly know how to maximize work output with minimal exertion!
Flutebell

Thanks so much for your response, it was very encouraging. I hope to remain with the state of MI in a less stressful position that will help me with my MG and a work life balance. I will not be returning to work until the first of the year, pending my response to treatment. So please keep me in your prayers to be able to go back to a less stressful work environment. I am currently on long term disability. I will also use my union at work to assist me with this task if needed. Thank God for unions !!!

The majority of folks who have MG figure out a treatment that works within a year of diagnosis and are often able to resume their normal jobs.

Since treatment of MG is lowering the immune system to diminish the production of the bad antibodies that attack our muscle receptors, we have to take treatment the rest of our lives and figure the balance of some immune system function and some immune system suppression. If we really rid our selves of all MG symptoms by treatment, we likely would succumb to every infection, virus and other problem as it would require complete immune system suppression. So a tolerable level of symptoms and treatment is what we aim for.

That means that means we probably will be less physically functional all the rest of our lives compared to pre-MG function. Think of it as adding 20 years of aging and wear to our bodies if that helps. That should tell us to find jobs that are less physically demanding as well as less stressful as stress seem to make MG worse.

Most "success" stories in MG are along the lines of -- life becomes decent; we are limited in physical activity to some extent; we are more susceptible to other diseases and we have side effects from whatever treatment we choose. That sounds grim, but before the 1960s and immune suppression drugs nearly half of folks diagnosed with MG died in the first year or two. Now it is a chronic condition, treatable, but there is no question it does change our lives.

How we adjust to the change is what determines the happiness and success of our future. Probably the most difficult is for folks who were athletes, runners, etc. who find that running may have to be jogging or walking. And of course anyone who does physical labor for a job is surely going to have to figure out a new career.

My own view was that I could change to adjust, and so instead of backpacking in the mountains, I switched to long strolls in the woods with a camera and lots of Kodak moments where I stopped to catch my breath and to compose a photo. Substituting a lower activity that was interesting for the old one. As a computer programmer, I could sit most of the day, but at times my fingers wouldn't work well enough to type more than a line or two at a time (however 60 grams of mestinon every 2.5 hours mostly kept my fingers working)

I am one of 15-20% who, after the first year and treatment went into complete remission which has now lasted for over 3 years (no treatment necessary). However, my neuro and I expect MG to return, and again I will have to adjust to it. This time it will be easier as a retired person.

Good Luck Russ

I too am struggling to continue working. I do have a sedentary job but keeping my head up and reaching to use my keyboard fatigues my muscles. My vision / eyes get worse as the day goes on because I am always focused on the 3 screens I use. As well as talking on the phone affects my jaw/neck/chest muscles and typing makes my fingers hurt. So far my employer has been understanding and I am a state employee (fed funded) in a union. I am a Disability Examiner for SSD... so I think they have been more understanding. Am waiting for a letter from my PCP to get an ergonomic work station assessment. Then I will work with my employer to put their recommendations in place. I know a high backed chair will help as it would give my upper back and neck some support.
It upsets me as my caseload has increased and those on my caseload are depending on me... I do my best and now that a GI has prescribed mestinon it has been better. But I am still figuring out how much I need. And my weakness varies. By the end of the week I am pretty worn out. I do little outside of work.

I work for a County in NY, and in my experience a child protective case worker is one of the most stressful jobs out there. Hopefully you can get into something less stressful which will be easier to deal with along with MG. I was lucky, I got diagnosed within a month of my first symptoms, so I could start treatment right away. I didn't miss a lot of work, but in retrospect, at the very beginning I should of been out on leave. My vision was bad, so I probably wasn't as effective as I should of been at work. But, within a couple months, things got better and I just had to deal with the side effects of a prednisone taper for 9 months. I am currently just on cellcept, and mestinon when needed. I still get a little weakness in the eye when I am really tired, but I can live with that instead of dealing with prednisone side effects again.

For me it completely depends on you supervisors. I've had both sides. One was horrible and micro manage ever moment I missed work even through I had most of my work done. Another on was great worked with me

Thanks for the reply Meng, hopefully I will return to work after the New Year, I have been receiving treatment since Sept. 2016 and is still getting acclimated to the medication and it's side effects. I'm hoping to switch to a desk job instead of the field work and stressful work environment that comes with being a CPS worker (Child Protective Services) for the state. I am going to talk
with my doctor. I am also an union member and will use my union as well before returning to work. I'm sure I will not be able to work the long hours that come with working on call which can include long weekends with little to no sleep. The overtime is good but the health risk for me outweighs the $$$$$. I am can work a 7 day work week and be on call Friday night to Monday morning. When my body gave out I was working an on call shift. I really appreciate your response I was feeling a little hopeless when I was writing my post. Thanks so much.

Hi Whales86, thanks for responding to my post. My current supervisor is great!!! I've been with her for going on 4 years. I like the office I work at and my colleagues, however the middle management is not so accommodating and working on call is a requirement of my position as a CPS worker. I agree having a good supervisor does matter. I would not work well with a micro manager or a bully for a supervisor and believe me I've had one in the past and I did not have MG. I ended up leaving the company. I know whatever I decide I will have to find my work life, MG balance. Thanks for replying to my post. Have a great week. I wanted to ask are you currently working and do you have a micro manager or a tolerant boss ?