Working with MS

I was diagnosed with MS in 2014. My symptoms can be traced back to 2007. I started on Copaxone, then Tecfidera, and am now on Tysabri. I have only 3 lesions in my brain. Lesions in my spinal column are my major problem. Fatigue, blurry vision, stiffness and spasms in my right arm/hand, back, and legs along with Trigeminal Neuralgia and numerous sensory annoyances are my major complaints. I'm a teacher and the school year is looming. I have missed a great deal of work in the past 2 school years due to 5 relapses. I'm having a great deal of anxiety over going back to work. When does a person with MS know enough is enough??

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  • i knew when i was fired! having aggressive rr ms at 23 i ended up on ssdi before i was 30. i still grieve not being able to work and i'm 38! i know....get over it, right! :)

    actually i am concerned that meds are not working for you. 3 years ago i had hsct and so wish i had it sooner. i failed dmds plus chemo and hsct was a last option for me. i know of patients who are able to go back to work after it. teaching must be such tremendous work. don't know how you do it!

    -nadine

  • I too was /am on the exact same regiments you are on currently on Tysabri has been for the last 2 years I'd say for the first 6 months I didn't think it was working but then I did notice a positive change, now as far as working goes I was diagnosed in2007 in 2008 the company I worked for kicked me to the curb, the reason being was they found a loophole in the ADA law that stated in short that if my doctor was filling out my private disability insurance papers he stated he did not know when I would be able to return to work and that was all they needed.

    Now they said they were not fireing me per-se that they were just removing me from the payroll but I could "re-apply" for my job when I was cleared by the doctor.

    Now with that said, could I have still worked, probably, but as I soon found out that the stress of doing my job, driving 45 minutes to work everyday ad so on did in fact made me feel worse as I am sure you know stress is one of the worst things for an MS patient, I would love to go back to work, by trade I was a paramedic/911 operator. But the job I lost was I was a network systems supervisor (that's a whole other story of how I got there) but that job was no stress at all I just sat at a desk and watched screens and other people that were under me, but even doing that I knew I was time to throw in the towel reason was by they time I got home had dinner and spent time with the family ( yes my daughter was 3 at the time) I was exhausted, in pain and just an all round mess, so that was it in a sense I was glad they let me go, but ever since 2008 I have just sat at home wishing I could go back e to work but I have come to the realization that I can't so now I help out around the house and do what I can to support the wife because she still works very day, so you just have to consider what's best for you and you family, because if I didn't have them I'd have no will to fight this monster,

    So I hope this helps keep hanging in there so times it's hard but you just have to keep fighting.

  • I am also on Tysabri. I taught preschool children with disabilities. Your situation sounds a lot like what I went through before I finally went out on permanent disability. I don't know what state you're in, but the state of Florida allowed me to collect my pension without being penalized for retiring early due to disability. It wasn't easy for me to say enough and I still miss it especially this time of year, however, I still remember all the relapses I used to have at the beginning of the school year and have to go out on FMLA for 3 months at a time. At the end, I what can I students and knew I could no longer give 100% so it was time. Good luck.

  • Good question Juleigh21. I know with me it was difficult but easy the same time. Let me give you a brief history of my condition. I was working as a firefighter when I was diagnosed. So I had a couple issues working against me. Heat and fatigue. I didn't let my condition become public but I did notify the proper higher ups because if something was to happen at work I didn't want any issues. After being promoted I decided I should make a change in job position, so I worked my way into being a trainer, that way I could control my working environment. After 5 years of faking my symptoms I came to the hard conclusion that I was tired, not only physically but of putting on a front so no one could see the struggles I was having.

    The decision to retire on disability was hard but easy because I wanted to leave on my terms, I didn't want to be forced to leave, retire or worst be fired. The decision will be hard either way you go, but one that most times comes before you really ready. Maybe you can transfer into a less stressful position.

    I hope this helps a little and good luck. Keep us informed of your situation. It'll work out for you just don't work to hurt yourself. Be pro-active, not re-active. Royjr

  • I went on disability when I started having problems doing my job, remembering things and having trouble staying awake at work. My neurologist told me that I had worked to hard and to lond. She also said that it was time to take care of me. I went for a neuropsychiatric test and it showed that the MS and stress from work were causing short term memory problems. I went on long term disability through work and applied for SSD. When I was approved by Social Security in 9 days I definitely knew it was the time to be on disability. It did take a long time to get use to not work.

    I think you should talk with your doctor about his/her feelings about you continue to work or go on disability.

    I wish you the best of luck making your decision. Just remember this has to be your decision

  • Hi, Juleigh21. Your body will let you know. The equation consists of two parts: 1) Does the damage that working is doing to me (stress, fatigue, etc.) outweigh the satisfaction or need I fulfill with my job; and 2) Am I doing right by the people I serve? In your case, it's the students. Are you able to give them your best? Are you able to serve their needs to the highest standard that they deserve? If you can't objectively answer "yes" to both of these questions, then you've got the answer to the second part of the equation. And only you know the subjective answer to the first part of the equation. The decision is one of the most difficult you will ever make in your life, but the most important thing is to be very honest in your assessment, both for your sake and for the sake of your students. Good luck.

  • Thank you Sukie427 for your perspective. School has been in session for 2 weeks now. Two days before school started, two teachers quit and the school board has decided not to replace them to save money. My caseload of LS students doubled. I'm drowning as is the other teacher in my shoes. I'm so tired when I get home, that my diet is suffering b/c I'm too tired to cook and most nights just pack my lunch for the next day and just eat whatever I'm packing. I doubt I'll be able to do this much longer. A relapse or infection will probably do me in. I'm already worn out.

  • Hi, l was a neonatal nurse for thirty years before I could no longer work. But don't think that your worth is diminished. I now help others with m.s.. l have collected and delivered groceries. Assisted m.s.'ers to sign up for meals on wheels and other government benefits. We could use you! If you find that teaching is too much, there are others to serve.

  • My PCP has sent me to see a behaviorist to start the process of my accepting that the end is near for the demise of my teaching career. We've discussed my feelings of self worth and what I'll do afterwards. Helping others with MS is at the top of my list😊.

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