Do You Work? Has It Been Impacted by MG?

[Joe B]

I spent 15 years building a career in construction working on mega multimillion dollar projects.  Get promoted to Sr Project Manager and this hits me like a ton of bricks.  In one year I hVe been hospitalized twice and now spent 3 months on disability.  Last month I could not chew, breath, walk, wipe, etc.

I have had miraculous results with Ultomiris combined with Mestinon as I taper from 60mg Prednisone.

Next Monday I go back to work and even though I’m OK to work, I’m terrified.  Stress seems to make me show symptoms fast and that is the only thing I have not tested over these past few months.

Most the stories I read people are old and in pretty bad shape both with MG and with their personal fitness and diet.  I’m really hoping that because I’m oy 43 and was in general fit shape I can manage this.

Any engineers out there who have had to change careers?  I SURE HOPE I DONT HAVE TO.  I don’t know ow what I would be able to do.  I’m so used to this high stress high Reward job.

[Paul Lull]

I’ve worked for 42 years as an engineer. As I near the end of my career I find that I am spending most of my time training and transferring accumulated knowledge to those (small group) that will replace me. For the most part I’ve only dealt with oMG (drooping right eyelid) but have recently noticed that speech is impacted after talking 15 to 20 minutes straight. My strategy has been to keep each segment to no more than 10 minutes ask if there are questions and have a round table discussion to assess if the concept has been understood. That is usually enough rest time for me to continue. If not, I explain the issue and people are generally accepting.

[Leanne]

I have MG for 32 years and still held down a job. I am 64 now and still work 4 days per week in a fairly demanding administrative job. I do get quite tired by the end of the day. I have problems now with my back, arthritis and severed my quadricep 2 years ago very suddenly. Doctors say most like like due to long term prednisone – so my mobility is not good. It’s actually not the MG that’s been the problem, it’s all the drugs and side effects that is wearing my body out.

[Diane]

I  am currently 59 years old and have been working full time for 28 years in a high stressed fast past manufacturing job in multiple positions and finally settled down in a payroll administration job up until May 2022.I was diagnosed with MG back in 2007.  I have generalized MG With double vision and muscle weakness in my arms and legs and difficulty swallowing sometimes and it effect my vocal cords quite a bit. but I have been able to work with out missing many days off. I have been able to push through my MG and rest when ever I can. Most of the time my downtime was my weekends and with the help of Mestinon. My thymus glad had been enlarged since the beginning but was growing and effecting my breathing and keeping my MG in a consistent flare up.

last year in May I had to have it removed and a good thing it was! It was cancerous and had to have 30 rounds of radiation. I’m have IVIG infusions every 3 weeks and currently going to physically therapy 2 days a week to help build my strength and mobility.I am still out on disability going on close to a year now.

I am very nervous about my job now because I am not able to get back to my normal routine and work a full time position.

my husband is disabled and I am his main caregiver and heath care holder.

Diane G.

 

[Mark Cox]

I’m 62 years old and I’ve only had MG a year now with all major symptoms via double vision, chewing, respiratory, speech and strength loss etc. I was in relatively good physical shape a year ago but my physical and some of my mental speech and concentration health have been affected. I Am a VP product line manager in the oilfield that requires 24/7 on call duty with a lot of traveling to inter-company districts and oil field rig locations. Without my Vyvgart Treatments, none of this would be possible. It’s still hard to dress in a hard hat, coveralls and steel toe boots to even walk across an oilfield location let alone walking up on the 30 foot rig floors. Even getting through the airports are difficult and use a cane or request a ride on their carts. I attended many operational meetings internationally and externally with clients and find my ability to concentrate or follow conversations can sometimes be difficult. The hardest part is sometimes finding the words or the embarrassment in mispronouncing common financial or industry words and terminology.. I find myself writing more emails to avoid verbal conversations due to this. Like most with a rare disease, I hope and pray that I can retain my employment at least until the age of retirement. I conduct a lot of blowout training with new people to the industry and on the drilling rigs and that feel I have a lot of experience and knowledge to give back to the industry. Keeping my wages and insurance are very important but I also seem to have stronger sense of still feeling useful and productive while managing through my MG. During my Vyvgart cycles, I have to manage my travels around my Wei infusions and actually have been infused in different states such as North Dakota that would allow. Some states do not allow this such as Nevada without a prescription from a Nevada Physician which can be very difficult as I have experienced.
In Short, MG has been a Game Changer to my employment and usually don’t share that I do have a rears disease such as MG probably because I’m too proud to accept preferential treatment.. This is just my experience in a short time and hope can relate to others experiencing similar employment type challenges with MG.

[Maryjo Hockman]

I was diagnosed with MG in April 2022 and went back to work August of 2022. My neurologist told me I was capable of working so I went back. Since then, I get tired every day as my job entails me getting up and down frquently and climbing 6 flights of 11 steps each sometimes 2-3 times a day. I really wih I could work from home but it is not possible cuz of the work I do. So I don’t have a choice but to keep working until I can retire which I was hoping for a year but now that I have MG and a recent diagnosis of a second autoimmune disease in Dec 2022, I dont know if medically I can retire until 5 yrs from now when I turn 65 and can get Medicare. If the government doesn’t change all that between now and then. Lol. So that is where I am at. I just don’t know from year to year if I will be able to continue to keep up.

[Bill Suphan]

I always had a very active life.  I graduated from college with a double major at age 20 and shortly thereafter went to USAF Officer School and pilot training.  Flew b oth prop and jet aircraft.  When I got out I got my CPA certificate and was CFO of a public OTC company which I helped take public.  I played a lot of golf and was an avid bowler and won several tourneys.  When retirement came at 65 I was figuring how many days per week I could afford to play golf, etc.   Then almost exactly when I retired I came down with symptoms and, as often is the case, I had problems finally getting the MG diagnosis.  When I asked if the test could be wrong I got a laugh and was told a really high number on whatever test is used.  I was told there was no doubt.  The retirement I had dreamed about was down the drain but I finally accepted that and have adapted and am giving my step son my clubs since he has taken up golf.  I have gone thru several medications with each having some positive effect.  I am on Ultomaris (sp ?) and have had very p0sitive results and I don’t mope around and feel sorry for myself having seen so many others suffer much more than I.  Sorry for the length of this.

[Renee Zuniga]

I was diagnosed in 2018 with MG did affect my career.
I pushed through till 2022 & finally had to retire at 61.
Although my employer worked with me as much as possible I was nk longer abke to work.
The job was demanding both physically & stessful situations were ongoing.
I have applied for Disability & was denied & now waiting on a response for reconsideration.
I do not understand being that I can not walk alone without assistance of a walker & unable to carry anything while walking which both were required tasks for my job.
Any toughts or response ?

[Jonathan A]

I do not work any longer in my career … as I hoped to.  My first symptoms of ACUTE OCULAR MG and GENERALIZED MYASTHENIA GRAVIS appeared on July 25th, 2019.  That morning I tried to switch the metal gates in the neighborhood’s square concrete IRRIGATION BOX.  It took 15 minutes of trying to get enough finger strength to pull the gates up.   My arms and legs were pooped out and I went straight back to bed.  Then it was the eye problems, droopy eyelids, eyes fighting each other to see which BEST,  dying every afternoon … legs and fingers being pooped out, etc. etc. etc.

It took me EIGHT MONTHS for a diagnosis of MG  …. there was no a single doctor, eye doctor, neurologist, neuro-surgeon    … who was able to diagnose their way out of a PAPER BAG.   So I started using up a lot of my unused SICK DAYS, calling into the sick line, if I had a bad morning (before my pm airport shift)  … or dropping a shift day on my computer calendars, with some other coworkers picking up my shift for extra $$$.    I  was still UNDIAGNOSED in OCTOBER 2019  … so I put in for an early retirement, medical leave for OCTOBER  30, 2019.       Still no one could diagnose me  …. everyone MG CLUELESS.  I was finally diagnosed by an experienced third floor nurse, eight months later in late MARCH 2020,  …  who recognized my symptoms instantly, as she had met people like me as patients.

She explained to her supervisors what MG was  … and they did a NEURO-CONSULT and  THYMOMA TESTS.  I am HORRIDLY SERO-POSITIVE.  They gave me 5 days of 5 hours of IVIG, CELLCEPT & MESTINON.   I am now in REMISSION, after over 5 months in 5 hospitals in 2020, after recovering from all the mistakes the doctors made.

Don’t be afraid TO WALK OUT the door and find a REAL DOCTOR !!!!  There are a few nurses, NPs and younger doctors  …  that have actually met patients like me and know what MG means in ENGLISH.