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    New here. :) This is my (long) story.

    Hi everyone,

    I am a 37yo female in Canada recently diagnosed with RRMS April 1st, 2020. I was really hoping it was just a bad April Fool's joke but was relieved to have an answer for my symptoms.

    My first symptom was a partially-numb left foot in Dec 2018 which I went to my doctor for, he did some poking and tickling and I still had some sensation so he wanted to wait and see for a couple of weeks. I had a few weeks of holidays and it resolved over that time so we chalked it up to long workdays on my feet. Then while on holidays in July 2019 I went through a hugely stressful few weeks with my dog getting diagnosed with bladder cancer (TCC), me and my boyfriend breaking up and him moving out, and then my dog passing away. That all happened between June 26th and July 9th. I had a friend visit from out of town as well for 5 days the week after which was preplanned and honestly at first I felt I could use the company, but hosting while grieving is still stressful.

    After holidays were over and my friend left town it was back to work and I noticed that the left side of my torso was numb from my bra line to my belly button, spine to sternum. My chiropractor thought it could be shingles and told me to watch for blisters, or it could be shingles without blisters (called Zoster sine herpete). I have had shingles before but I didn't remember it feeling like that first and with such a large area. I had pain over my ribs that made sleeping difficult and neither Advil or Tylenol worked for it. I went to a walk-in doctor (because my regular doctor takes a couple of weeks to get in to see) and he prescribed a stronger concentration of Voltaren to use at night. He didn't think it was shingles and did mention MS as one of the possibilities but said he wasn't sure because it "doesn't usually present this way" and described the MS 'hug' feeling which I didn't have. He said to follow up if things got worse.

    I booked in with my doctor and saw him a couple of weeks later. He referred me to a physiatrist (Physical Medicine and Rehabilitation physician) as it would be faster than waiting for the neurologist and might get me an MRI quicker. They did an x-ray of my thoracic spine and found no issues. He also found the fact that it was such a broad area "interesting" and dismissed shingles. He tried to do an EMG but my muscles did not want to calm down and so we gave up on that and he ordered an MRI. They found a small area of demyelination on my T7. Both my doctor and the physiatrist referred me to the same neurologist and I think having two referrals (or maybe one from another specialist) sped things up perhaps because I have known people who have waited for much longer to see the neurologist and I think I only had to wait 7 weeks for the consult. During that time, however, the numbness on my torso switched to the right side (although the rib pain still remains on the left), and my right leg became a bit weak and partially numb as well and that even jumped to the left leg for a bit and then back to the right leg. Both of my feet also are partially numb now. I got another MRI done of my brain and cervical spine in mid-March and they found a few more lesions so I was diagnosed with RRMS.

    I just started Tecfidera last Saturday and am on a very slow titration schedule, even slower than the recommended starting dose written in the packaging. So far so good and only two episodes of flushing; the 2nd was a bit more uncomfortable with itching/redness on my face and neck and in the bends of my arms. Both episodes only lasted probably 20 minutes. Not consistent enough for me to take the Aspirin yet, but we will see what happens when i increase the dosage.

    I am so grateful to have found this forum so I have another resource of people to talk to and learn from. I guess one thing I would maybe ask about is your personal experiences or recommendations with when and how to disclose information to employers/coworkers, seeing as I may have side effects from the medications while at work, etc. Also, leg weakness and fatigue is a thing right now. Most people know about the torso numbness and such but only that I had an upcoming neuro consult, etc. A few people know about the possibility of MS but not that it is confirmed.

    Thanks for reading!

    #2
    Welcome Panache

    We're glad that you found us here at MS World! As you explore the site, you'll find a lot of good information, as well as a chat room, arcade, creative center, and much more.

    Sounds like you had a rough go of it for a time, with the loss of your dog, relationship breakup, and MS symptoms flaring up. Sometimes when it rains, it pours.

    Hope you have continued success with the Tecfidera, with minimal, or preferably, no side effects.

    Regarding the when and how (or if) to disclose your MS dx at your workplace, there are factors to consider.

    I had very visible physical symptoms when I was dx'd (gait abnormalities, falling at work, arm and hand weakness, dropping things) so hiding it wasn't an option for me.

    But, there are also persons with MS who have not disclosed at work after many years.

    Here is some helpful info from the National MS Society - Should I Tell?
    https://www.nationalmssociety.org/Li.../Should-I-tell

    Hopefully other members will share their experiences with disclosure at the workplace, as well.

    Looking forward to having you continue to post and share with us!

    Take Care
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Welcome to MSWorld, Panache! You have come to a good safe place to share your story, your questions and comments as we all know what it's like to have MS. You will find that there is a valuable sense of camaraderie here with all sharing our understanding with compassion.

      Like you, when I finally got my diagnose I was a bit relieved to have a name for all the symptoms I was experiencing. I told my upper management right away and was fortunate to have them supportive of my circumstance.

      After a time I had to ask for reduced hours, ADA accommodations and applied for FMLA.

      That was when I had to let my co-workers know. Again, I was lucky that they were OK with that having worked for many years.

      But, it is a personal choice and one in which only you can decide.

      Here is another article on disclosing a disability to your employer. https://www.hercjobs.org/disclosing-...hen-to-how-to/

      I hope you do well on Tecfidera!
      Please come back often to share more of your journey. We are all here to help one another
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

      Comment


        #4
        Hello Panache and welcome. I can relate, I've had and still have a lot of the same sx's as you. This forum is a good place for infor. and support.

        I hope you do well on Tecfidera and hope you come back often.
        God Bless Us All

        Comment


          #5
          Hi there!

          From my personal experience, I've decided to keep the diagnosis mostly private. My symptoms are not very viable, so I have that luxury.

          About maybe 15 people in my life know about the diagnosis, and some of those I told early on and I regret it.

          At first, I kept the diagnosis very secret with only a handful of people knowing. I find that there is a fine balance. I've struggled a lot with the diagnosis and allowing myself the freedom to tell a few friends really eased my mental turmoil. It was surprising how liberating it was to talk about it and now I don't feel the need to tell more people.

          As much as I would love to trust the fairness of the system, I know that employers have the potential to hold bias against people they don't feel will be as competent as another potential employees, so I am also hesitant to announce "to the world" about my diagnosis.

          I also took Tecfidera and I know it works well for many. For me, I had to switch to Tysabri after a year. There's lots of advice out there about how to avoid flushing with Tecfidera (I read a lot of message boards!). The most important thing to remember is to never take it on an empty stomach. I felt eating a meal with fat in the morning was the most helpful for me. I would usually eat a pretty normal breakfast for me, and then also eat a scoop of natural peanut putter as well.

          Comment


            #6
            Welcome Panache. Glad you found us.

            It takes a little while to get used to a diagnosis and can sometimes be an emotional roller coaster ride. At least it was for me.

            I am not familiar with Canadian employment laws. In the US, we have protection laws, but even then, sometimes discrimination may occur. So here, they recommend not disclosing unless you need to ask for an accomodation to do your job. Even then, you don't need to disclose, just have a doctor's note stating you have a medical condition, and need a specific accomodation(s) to do your job.

            I did disclose when having trouble completing my work and had multiple short term disability leaves. I had asked for an accomodation, providing a flexible work schedule from home, with longer mid day breaks,when needed. The doctors request did not say MS, but I verbally told my boss, his boss, and my teammates about my diagnosis. I had impacted some key project dates that they were all taking heat on, so I felt I owed them the truth. This occurred 8 years after diagnosis and 21 years after first relapse.

            If you are not sure, check into Canadian protection laws. If you are showing symptoms, but aren't sure about disclosing and people ask, you can always say you are under a doctor's care and testing, just not letting on you have an answer.

            Good luck with Tecfidera and welcome again!
            Kathy
            DX 01/06, currently on Tysabri

            Comment


              #7
              My symptoms are not visible.... Somehow I wrote "viable..." in my post below. That would be slightly different. I love this forum, but I don't like many of the restrictions. I actually get anxious when I re-read my posts and see grammar or spellings errors and am not able to edit them

              Comment


                #8
                Originally posted by sarabeach123 View Post
                My symptoms are not visible.... Somehow I wrote "viable..." in my post below. That would be slightly different. I love this forum, but I don't like many of the restrictions. I actually get anxious when I re-read my posts and see grammar or spellings errors and am not able to edit them
                Sara, if you select the Preview Post tab (to the right of the Submit Reply tab) before you submit your post, you can re-read and edit your post at that time.

                Also, the Mods will be happy to edit anything that you want us to change.
                PPMS for 26 years (dx 1998)
                ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                Comment


                  #9
                  Welcome!

                  Like many of us, it looks like it took awhile for you to get diagnosed after you began experiencing symptoms.

                  It also looks like you've been through a lot of changes, grief and loss recently. And all this in the middle of a global pandemic.

                  I am also a Canadian. I grew up in Saskatoon. I married a US citizen in 1984.
                  I have spent my adult life in the US. We live in Kansas. I finally took the plunge in 2015 to become naturalized and obtain my US citizenship so now I am a dual citizen.

                  Most of my relatives still live in Canada, including my dad andd many aunts, uncles and cousins. My daughter reversed my footsteps and met and married a Canadian. They live in Manitoba.

                  Some of my MS story is below in my profile info.

                  I hope you'll come back frequently
                  ~ Faith
                  MSWorld Volunteer -- Moderator since JUN2012
                  (now a Mimibug)

                  Symptoms began in JAN02
                  - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                  - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                  .

                  - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                  - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                  Comment


                    #10
                    Thank you all for the warm welcome!

                    Thank you for the links, KoKo and Seasha, and everyone else for sharing their personal experiences on disclosure; it has all given me some things to think about. I think for now I will plan on keeping it close to the chest until I feel I have to say something due to symptoms. I am definitely an 'open book' kind of gal, however working in an office of 45-50 women, and not all of them friends, the gossip can sometimes spiral away from the original information. Right now my symptoms are not visible, which I am grateful for, and being laid-off right now is giving me lots of time to figure out what size/type of meals work best with the doses so hopefully the side effects will be minimal. Hoping to have this all set into a firm routine by the time work resumes which sounds like it could be in a couple of weeks.

                    Thank you again for your input!!

                    Comment


                      #11
                      Welcome

                      Well first I must say sorry about your diagnosis.

                      Unlike most people here my journey to a diagnosis was short. I went in the hospital over a weekend for a stroke they thought at first. They did an MRI, EKG, and other tests over the course of the weekend.

                      I left the hospital with an MS diagnosis, a neurologist appointment, and physical therapy.

                      The physical therapy was the first appointment with the neurologist later that week.

                      My stepmom didn't like that so she got them to change the appointments around.

                      I went to the neurologist and he said the physical therapy wouldn't be helpful at that time.

                      They also talked about doing a spinal tap while I was in the hospital, but never did it. When we saw the neurologist he said based on the MRI it was MS and their was no need to do the spinal tap.

                      That was in December 2006 and I have tried to keep working, but it's not working out so I am trying to get on Disability.

                      Comment

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