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    nurses with ms

    I sooooo needed to read all your passages!!! I was diag Feb 08. and have not gone back to work. I work in 1 of the busyest Emergency depts in the country. I miss it soooo much, my 2 small kids keep me busy but I want to go back. I just dont think i can handle the extreme stress, my cognitive part of me has declined, so that makes me scared. what does it take to get disability, I mean COME ON!!!!!! Do they even get what we go through????? OK i'm off my soap box now!!!!

    #2
    I was diagnosed in March of 98 and ended up taking a weeks worth of solumedrol drip. (which I absolutely hated to say the least). I am still working full time as an OR nurse but in the past few years my job has changed so I no longer spend much time doing surgery.

    My symptoms are very mild and I hope that they stay that way. Frequently my co-workers will tell me "I always forget that you are sick".
    Wendy

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      #3
      Newly DX RN

      I was Dx in Feb 09 - Lord knows how long I have been having sx. I work in a busy outpt surgery dept. thankfully I have not had to take any time off work - but I have switched from 10 hour shift to 8 hour shifts and that has help. It is so good to know that there are more working RNs with the same dx
      Bless ya'll
      Christa

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        #4
        I've been a nurse since 1985-worked in the ED. Began having obvious symptoms in the summer of 94 then dx'd in 95. I had gone to the OB-GYN floor in 94 so the stress level was lighter than the ED.

        In 2000, my walking became more difficult and I took a job in OPS doing preadmission paperwork. I was able to do that job using a walker and then a wheelchair. Last fall, I began having some funny feelings in my right hand. My writing eventually worse and December 15 2008 I went on a medical leave of absence.

        They were unable to offer me a job where I didn't have to write so much and my hospital has not gone to computer charting. After 6 months, there hasn't been much improvement so I had to go out on disability. I applied the end of December and it was approved in July.

        I hate it. I miss my patients. I loved what I did and how many times have we seen someone retire then they soon go down hill? Anyway, to you nurses, hang in there if you can and see if your employer will work with you. If you can't, apply early. I'm glad this forum is up--I feel that nurses often go through things in a different way than the average person with a disease. Afterall-we are suppose to be the caregiver not the one who needs the care.

        *** Moderators note: broken into paragraphs for easier reading***

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          #5
          My Little Secret

          I have yet to tell my employer or any of the nurses that I work with that I have MS. I have been dealing with MS for over 20 years, about as long as I have been a nurse. I recently started "The Shots" because my symptoms, after all these years, got worse. How do you tell or do you tell everyone? I don't want people to look at me differently. They think I am the picture of health!

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            #6
            Compensation

            I was dx'd in Feb. '09 after 20 years of symptoms. It all came to a head and they were able to dx me. I working in a Level I Trauma center as the psychiatric RN. in the evaluation unit. We were in the process of going to a paperless system and using an Exel computer system.

            Suddenly I could not read the screen anymore. After checking myself I realized that I could not see anything out of my rt. eye. That was the beginning of the end. Eventually they told me that the hospital did not have a position for me so I could resign or be "let go."

            I applied for Social Security disability. That was a nightmare. I was told it would take three years. My wife and I drained our accounts. I was told that I had to be refused three times before they would take me seriously. After the first refusal I decided I needed a lawyer.

            I went with Binder and Binder who specialize in this stuff. In six months I got my first check. I highly recommend them. They kept me posted at every point and the gvt. seemd to not want to mess with them as B & B knew what they were doing.

            Now my MS aside we are living back to normal. I highly urge you to call and talk to your local office. Save time and money for your self.

            I wish you the very best.

            D.

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              #7
              I have been a rn in ICU cathlab and tele for 25 years and a travel nurse for the past 8 years, dx july 08, i now have secumbed to quit doing what i have loved to do , my thought process is not there and i cannot see, with double vision, dizziness and stroke like symptoms i would not want me to take care of my family, i have not drove for 2 years and feel done, with stress of being a nurse my sx and exacerbations, i have more sx and they are staying, even with steroids. i read allot of your comments and know that i am not alone and not crazy, i have just applied for disability and would like to know how long it took and anything i can do to make it go smoother, i have copies of every medical record lab test etc. i am 46 and i was not ready to go through this, it was not in my plan.and i have always taken the flu shot and Neuro dr says not now. iwas on copaxone for 1 year and started having cp,papations and passing outmso he stopped it and starting on avonex tommorrow. God nows how it will go. appreciate any advice

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                #8
                i just "outted myself"
                i was Dx 6/10
                i only told family and 3 friends
                promised all to secrecy
                the 3 friends got angry with me and said that i should tell people so that i could have support (read that: i can now freely gossip about your situation)
                anyway..
                i wasn't ready, i needed time and i took it
                i'm new to this facebook generation and had my 15 set me up and now that i'm ready, i posted it there.
                work friends are on there and are now aware and so, the tounges are a-waggin'
                i was going to try to keep it uber-secret but then i thought, why? this is my life and ***** r/t to this dz is going to impede on it and my work and so, everyone should know straight up.
                that's just me, though..
                God bless

                Comment


                  #9
                  Originally posted by smokeycat View Post
                  I've been a nurse since 1985-worked in the ED. Began having obvious symptoms in the summer of 94 then dx'd in 95. I had gone to the OB-GYN floor in 94 so the stress level was lighter than the ED.

                  In 2000, my walking became more difficult and I took a job in OPS doing preadmission paperwork. I was able to do that job using a walker and then a wheelchair. Last fall, I began having some funny feelings in my right hand. My writing eventually worse and December 15 2008 I went on a medical leave of absence.

                  They were unable to offer me a job where I didn't have to write so much and my hospital has not gone to computer charting. After 6 months, there hasn't been much improvement so I had to go out on disability. I applied the end of December and it was approved in July.

                  I hate it. I miss my patients. I loved what I did and how many times have we seen someone retire then they soon go down hill? Anyway, to you nurses, hang in there if you can and see if your employer will work with you. If you can't, apply early. I'm glad this forum is up--I feel that nurses often go through things in a different way than the average person with a disease. Afterall-we are suppose to be the caregiver not the one who needs the care.

                  *** Moderators note: broken into paragraphs for easier reading***

                  Comment


                    #10
                    sooo know

                    I can so relate to your post. I've been a RN since "90. Worked 2 fulltime jobs at one time,( remember when you could easily work your 12s in a row,) and didn't have a problem. Started having sxs and had to cut back more and more until I am out on disability.

                    I miss work, pts, staff, hustle and bustle, even cafeteria food. I go up to my unit to visit and there are so many changes and I realized the last time why I made the right decision. I thought when I started my STD that I would go back to work. Little did I know at that time, I wouldn't.

                    Now, I know this is best. I have no schedules to keep. I get things done when I can. If I can't, I just DON"T.
                    But, I do miss my nurse friends and work more than I thought I would.

                    Comment


                      #11
                      I am also a nurse with MS. Diagnosed in March of this year, I am only having mild and annoying s/sx. Luckily, it has not affected my ability to work although, like others, I find it is becoming more difficult to do 12 hour shifts. I am back in school so I will be prepared to take other nursing jobs that don't require shift work, such as case management, administrative nursing, teaching, etc.

                      Comment


                        #12
                        NEW SYMPTOMS, NO NEW ANSWERS!!!!!

                        I AM TRYING TO UNDERSTAND THAT THIS DISEASE IS JUST AS COMPLEX TO UNDERSTAND TO ME AS SOME OF THE DOCTORS OUT THERE. I COMPLAIN THAT MY BACK HURTS SO BAD THAT EVEN LYING DOWN HURTS, SO WE DO X-RAYS, MRI, NOTHING SHOWS, SO IT'S KIND OF PUSHED ASIDE, AND I WAS TOLD HOW ABOUT EXERCISING, NOW COME ON, MY BODY ACHES AND YOU WANT ME TO EXERCISE, I TRY YO WALK AND MY LEGS ARE LIKE JELLY, MORE TESTS, NO ANSWERS, SO NOW WE TRY HIGH DOSE STEROIDS, HORRIBLE SIDE AFFECTS!!!!!! MY FACE IS NOW BECOMING NUMB, CALL THE DOCTOR, GO FOR ANOTHER EXAM, HE SAYS THAT THIS IS UNFORTUNATLY THE MS, HOW DOES HE KNOW THAT, IT SEEMS LIKE WHEN I TELL HIM A NEW SYMPTOM, HE SAYS "IT'S PART OF THE MS" THIS IS NOT A KNEW DISEASE, I'M SO FRUSTRATED, THAT THERE IS NEVER A ANSWER!!!!!!!!

                        Comment


                          #13
                          Not funny but too funny at the same time

                          I had back surgery in May now have Poss MS per neurologist " not ready to give my numerous brain lesions and two cervical lesions" that name yet mainly because she feels my gait problems are from my back but neurosurgeon (not the one who did sx-stupidly went to a ortho for that) says it is because he fells I have MS. Aside from the gait issue I had back pain before back surgery and my lower definitely back shows years of primary type nursing in long term care. at any rate my neurologist who specializes in MS says MS does NOT cause back pain. Thus why I found your post too funny as we have opposite problem but both due to Back Pain. Maybe your FP could get you in to see a neurosurgeon that will really look at your back and not automatically say it is your MS- or worst comes to worst try an ortho - it did stop my back pain just didn't help the gait. Good Luck

                          Comment


                            #14
                            It is hard

                            I was dx 2/2006. I was having fatigue issues before that and not able to work the twelve hour shifts for while or what I did is not work back to back twelve.

                            Then I started teaching and that helped, and I did the clinical portion so I still saw the patients.

                            Did that for a little more then three years and just could not do that, so stayed strictly in the lab at the college for a couple of months, then I could not do that anymore either.

                            I stopped working in Feb this year, was on STD, went to LTD which took a month and a half to do.

                            I am still waiting for SSI to approve me, just saw one of their Docs the other day. That was a waist of my time. He just interviewed me, that covered the same things I put on my application. What a waist of tax dollars.

                            I dont miss the physical part of work. I some of the mental part. The challenge of the students or patients. The bantering with the Drs. Sometimes sends me crying even with the Antidepressents.

                            It is very hard to be on the receiving end of the care and the frustration of the disease. But, we can understand when the Dr get frustrated.
                            God Bless and have a good day, Mary

                            Comment


                              #15
                              nursing and m.s.

                              i was a very active nurse running an ofice for a surgical teaching group after2 years in the i.c.u.and quit as my husband had to torelocate his job and we wany=te kids, so i tried for ssdi TOOK 3 REFUSALS AND A LAWYER TO OBTAIN THE SSDI BUT WE HAD 2 DAUGHTERS AND I AM NOW A LONELY HOUSEBOUND PATIENT, THE STRESS OF WORKING WOULD KILLME NOW BUT IAM HOME LONELY AND UNDER CHALLLENGED (BORED)WHAT A WASTE OF A GOOD BRAIN BUT WHAT A WASTE THEIR FORMATIVE YEARS . STILL LONELY AND UTILIZING A WHEELCHAIR NOW IT IS HARD AT TIMES BUT I STITCH AND ***** ABOUT THE UNFAIRNESS OF IT ALL BUT WE ARE EXPECTING A NEW GRANDBABY IN JULY SO THIS WILL BE A GOOD THING.

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