How has MS affected your career? - My MSAA Community
How has MS affected your career?
It has not affected by career yet, but I am noticing changes in my physical abilities that may alter my work career.
For a long time I could not work and my family and I were so broke it was incredibly scary. Then, I changed diet and nutrition, and while I still use a wheelchair, I now tutor and write. Huge change!
Hi katepoet, can you say what you did regarding diet and nutrition that helped you? I finally got to the point and had to stop working after struggling for the last 2 yrs to maintain my job. it has been very difficult financially for my family and I am looking into diet and nutrition options.
I have read about a number of vitamins, supplements, etc. that are suppossed to help. Also everyone has different symptoms and needs- it gets overwhelming to sort out what approach to take!
I had been on Rebif and my neurologist wanted to put me on Tysabri now but after getting a second opinion was diagnosed with spms- the new neurologist has advised that Tysabri would not do anything for me because it is for rrms......
the doctor has said there really are currently no DMT to treat spms and so diet, nutrition, exercise and less stress may be only options I can control at this point.
Sorry for rambling on and on! There is just too much to talk about and being my first post I got carried away:-).
Can you email me your email or message it here? I have a couple short documents that list most of what I've done between diet and nutrition. Glad to share it with anyone.
livingforacure@gmail.com
I don't think you should believe everything your neurologist says! A neurologist in the state of NY recently called for a change in the names/descriptions for MS, saying that the term, RRMS is inaccurate, because really, MS can relapse, but it doesn't ever remit. Also, the determination of RRMS vs. SPMS is very subjective. You should be (in my opinion) on a DMT. Ask around and find someone more helpful.
I think you might want to find another neurologist or revisit the Tysabri option. The newer thinking is that RRMS vs. SPMS is a construct. Some doctors are calling for retiring those terms, because on some level, MS may relapse, but it doesn't really ever remit. That is, even if you seem to recover after an attack, there are most likely remaining tiny "deficits." (Don't you just LOVE being described that way? 😏) Anyway, there is still so much that they really don't know. My neurologist (who I'm guessing is in his early '60s, but maybe younger) told me that if he was Dx with MS tomorrow, he would want to be on Tysabri. I replied, "Because you aren't 20 years old?" He gave me a wry smile and said, yes, and because it's got the safest profile and is powerful. I have to add that a big part is that I am JC negative. That makes all the difference in the world, too. I believe that you should be on some kind of DMT. Also, ask about ACTHAR gel. It works very similarly to straight up methylprednisolone (steroids), but works a little differently and the best part is that you can give yourself the injections: no home health nurses sticking you endlessly trying to find a vein, disrupting your entire day, etc. It is very expensive, but may be helpful for you.
I was a service manager for a big auto repair company, when the onset of the disease began. I went from working 45 plus hours a week to not being able to walk for days or weeks at a time. I was terminated for poor performance, once they saw me stumbling around a stock room. I haven't worked since 2009. It was a giant adjustment for myself and my 3 children for whom I was the sole provider. It is still hard to sit and depend on others for my care, even though I receive disability. MS stinks!
My lovely wife has PPMS, and she is undergoing assessment for ill health retirement.
I was a very successful lawyer when I got diagnosed. The disease has progressed for me more quickly than I anticipated, and the physical limitations I developed, along with the "cog fog" and fatigue, forced me to retire 3 years after the diagnosis. That's probably the biggest thing that I hold against this rotten disease.
Simone, it's Fancy1959. I think, at least for me, it wasn't fair to ask how my MS affected my career, it was how my over the top, no need to that stressful of a career affected my MS. My late career had the poorest high level management that I ever had the misfortune to work under. In less than two years I came to the tough decision that I wasn't going to let the Section Supervisor job either totally disable me or that I wasn't going to die working. I was great at the job, the 75 people I supervised respected me and liked what I was able to accomplish on their behalf. I made their jobs easier and less stressful. While my manager and the director above thrived on creating stress and havoc for me.
I'm an RN, and I've been doing home health. Crazy because I would often have patients who are home bound due to MS. Still, although I never felt exempt, I just guess I didn't foresee MS taking me out so soon. I'm in my prime...35 next week. God-fearing, single mom of 3. We are blessed...I was diagnosed while on Active Duty (Navy), so I, unknowingly, set myself up for security. Retired FOR NOW! I will get well enough to go back to being a nurse!! MS can't take my career away for too much longer! I refuse.
I was fortunate to know about the American Disabilities Act, and JAN [Job Accommodation Network] along with a team,Occupational Therapist, Physical Therapist, Family Doctor, and my "soon to be ex" a Social Worker, i developed a plan, and had documentation to qualify for accommodations, including an aide to assist me part time. I am a teacher a continued in the classroom for 2 years after diagnosis, and after dealing with some well meaning but"crazy parents ", kids, and administrators, my body went into a relapse...stress induced and I decided to teach Basic Skills Students. Struggling learners, who like us, have difficulty with processing and communicating information. Many have been behavior problems, but i find working with them a true honor and joy. I am living and working on faith...so blessed to still enjoy both.
MS really didn't affect my job. I have been on disability since l lost the feeling in both feet. They also took into account that l have had 2 back surgerys. I miss my job tho, l was an Inventory and Receiving Manager for plumbing and heating wholesaler's.
Hello, I'me new here. I'm Dave Maskalick who with his PhD led R&D efforts at a pharmaceutical company beginning in 1984. I was diagnosed with MS in 1986. For the next fourteen years I was able to continue to lead development efforts and obtain a promotion until my decreased memory and my inability to quickly analyze and solve problems became so apparent to upper management that I had to report any condition, and, was politely asked to take long term disability.
MS Took it away like most other things in my life...
I worked for seventeen years in the commercial construction industry as an ironworker, due to the physical stamina needed to preform this work and safety concerns I had to retire from the trade.
