Do You Work? Has It Been Impacted by MG?

[Jodi Enders]

MG can be life-changing in a large variety of ways! One of the most common changes one will experience in their life after MG symptoms start up is how it impacts their career. 

 

Who can testify to this?

 

I know I can and all those diagnosed during college like myself. It can be frustrating, confusing, and full of worry and pondering about the future. I was in my last semester of college pursuing archaeology when I got my diagnosis. MG shocks your world when you instantly know it will transform all your plans. I had to be realistic that archaeology wasn’t a safe bet of a career to pursue. It certainly wouldn’t have been what I pictured if I did continue down that path. 

 

It can be a good change! I firmly believe MG was destined in my life to change the course of my life for the better! I am looking forward to my career now that accommodates my MG more than anything I used to think I was going to do. 

 

Do you still work with MG? In what ways has MG altered your ability to work? Did your career field change? What are your feelings towards the career path you are on now? Does it accommodate MG, or do you push through a job that is demanding on your body?

[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.

[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.

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