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Physician newly diagnosed with MS

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    Physician newly diagnosed with MS

    I am a 42 yo male surgeon who began having symptoms in June 2017. First noticed some peripheral vision changes and retro eye pain with inward gaze in one eye. I have always been healthy and would have ignored this, but it was different enough to make me want to have it checked out. Saw my optometrist who noted a 3% visual field loss in the eye, the optic nerve was normal in appearance on slit lamp exam. Retro eye pain worsened with all directions of gaze over several days, saw opthamologist who noted some loss of red color vision in one quadrant of same eye. He recommended MRI with contrast of brain and optic nerve set up for early July 2017.

    2 days prior to MRI, awoke with right arm paresthesia, shoulder/arm weakness, and soon developed some right ear numbness. Once per day would have tingling pain along right side of body that lasted only seconds and not associated with neck movement. MRI confirmed optic nerve inflammation and showed several small periventricular white plaques, some old and new based on the contrast enhancement of some.

    Saw neurologist in July and neuro exam was normal even though I did not feel normal in that arm. He reviewed MRI and said it was likely MS and wanted a spinal tap. I started oral prednisone taper and had good partial response over 24 hours with shoulder weakness and paresthesia. Eye pain, ear numbness, and right sided body tingling had resolved on its own already.

    Spinal tap was done July 17th and was easy and painless luckily. Got results at end of July that showed 4 antibody bands. I had been researching DMT meds and talking with a couple people I knew with MS and their experience with Rebif and Copaxone (both have done well). My neurologist suggested Plegridy based on its every 14 day injection vs 3x/week for Rebif or Copaxone.

    Insurance approval took several weeks, but my Plegridy starter pack arrived 8/24/17. Gave my first injection on Friday night 8/25. Took 2 Motrin and 2 Tylenol PM prior to injection. No flu like side effects so far on the 63mcg first dose.

    I canceled most of my surgeries in July. I started back doing my most physically demanding surgeries in August, but I have purposely cut my schedule back to see how I do with some fatigue and was worried about side effects of the Plegridy.

    Looking back my wife noticed me bringing more work home in the evenings and fatigue that probably started in March or April of 2017. I know I am lucky in that my time to diagnosis and starting DMT was very short. I researched symptoms and read forums like this to educate myself. I am posting this so others may read this and help them if they experience any similar symptoms.

    #2
    Hi MD

    Welcome to MS World.

    Thank you for sharing your experiences with us.

    Wishing you the best!

    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 MS World, and of course I'm sorry you're here. MS is probably not the optimal? dx for a young surgeon, but hopefully with early dx and DMDs you have many years of successful work ahead of you.

      Wishing you the best and take care

      Comment


        #4
        A warm Welcome here too, MDvsMS!

        Thank you for sharing your experience to help others and, hopefully, other's experiences may help you as well. You are fortunate in getting a fast dx and a DMT. I also wish you many years of successes in the future.
        1st sx '89 Dx '99 w/RRMS - SP since 2010
        Administrator Message Boards/Moderator

        Comment


          #5
          Welcome! Thanks for sharing your experience. I hope you get all of the possible benefits of starting treatment early.
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #6
            MD+MS

            Hi MDvsMS,

            I am also a physician with MS. I got my diagnosis in 2003, so I have been living the dual life of physician/patient for a while now. I am not a surgeon, so I won't pretend I can imagine what you've been going through these last few months. If it would help in any way, I'm here and I would be happy to answer questions or,... whatever. Just let me know.

            Best,
            Jennie

            Comment


              #7
              Thanks for sharing, MDvsMS . Welcome to the boards and I hope to read more from you, in the future! Good luck with this mess (MS) !

              Comment


                #8
                Hi MDvsMS and welcome to MSW. I hope you come back often.

                Wishing you all the best.
                God Bless Us All

                Comment


                  #9
                  MDvsMS:

                  Welcome to MSWorld! We're all here to share our experience living with MS. Let us know how we can help.

                  Just curious... hope this helps:
                  How did you select the doctor who is treating your MS? Is he/she an MS Specialist?
                  In my experience as a patient, having a neuro and team who specialize in MS, including experience with thousands, or at least hundreds, of MS patients will be a big plus during your journey living with MS.

                  Do you have access to a Comprehensive MS Center in the region where you live?

                  Just trying to be helpful here.

                  Best Wishes!

                  Time

                  Comment


                    #10
                    Thanks for the replies.

                    Jennie,
                    I appreciate the offer to talk and I will probably take you up on that at some point. I am sure you have already faced many of the decisions that face me in the future. Decisions of how to decrease stress, deal with call/sleep, and keeping busy with clinic/surgeries to cover my share of overhead expenses in private group practice. MS is so unpredictable, I worry if/when I have a relapse how that will impact my ability to contribute to the practice and put my partners in a bind.

                    I stay positive about MS, it's easier because my symptoms are mild compared to many I have read. If it progresses faster than I hope, I have private specialty specific LTD insurance that would cover my family. I operated yesterday and love what I do, I texted my wife between cases that whatever happens, if I have 10 cases or 10,000 more cases left in me I was going to enjoy every one of them.

                    Time,
                    I worked with a couple of neurologist during my medical school days (16 years ago) that I liked personally and have trust in. I was happy to get an appointment with one of them quickly after a phone call from my doctor. He is a general neurologist about 80 miles away and I have had one appointment and a phone call with him. It works out well logistically as I travel to that town once a month to teach resident physicians in the morning and can schedule my MS appointment in the afternoon without missing more time from my practice. T

                    here is a MS specialist about 2.5 hours away that another person in my office goes to for her MS. She likes her and switching to the MS specialist is always a possibility in the future if I think it would be better for me. For now I plan to stay with my current neurologist.

                    Comment


                      #11
                      Hello and welcome. Your timeline from onset of symptoms to diagnosis and accompanying tests is similar to mine (symptoms presented in June, diagnosis by August). I am not a physician but an attorney and I too, worry about how a relapse would affect my work. At the moment, I am just taking things as they come, one day at a time. Hey, it works for booze (I am in recovery) so it can work for this too! I hope the Plegridy works for you and gives you minimal side effects. I am currently awaiting insurance approval for Gilenya.

                      Comment


                        #12
                        Hello MD

                        Hello MD

                        I am diagnose myself since Nov16. Been on Tecfidera.
                        I keep a close eye on new therapies. I found newly approved drug called Mavenclad. Merck is approved in the EU. In USA, the drug is called Cladribine. It is not allowed to be marketed for MS in USA yet. However, it could be used off label. I have been trying to find a doctor in USA willing to treat me with it. You may have better luck since you are a doctor. You should look into this option. The thinking is that this drug works to "reset" the immune system. It is also able to cross the blood brain barrier. If you go down this path and find a willing provider, please let me know, because I would be next in line.

                        Good Luck,
                        Andy

                        Comment


                          #13
                          Welcome to the community! Sorry you are going through this.

                          I am a pharmacist and I was diagnosed in 2011 at age 29 . I have just had my third exacerbation (first episode of ON). This is similar to an issue that I struggle with as a healthcare provider. At what point am I worth more to the healthcare system as patient vs as a healthcare practicioner?


                          I work with post-transplant and hepatitis C patients and before they get started on treatment I often describe the process to them as "taking on another part time job- managing your health- you have to commit x hours /day or x visits per week to managing this" .

                          It is so much harder to practice what we preach!! I work in a large system, but it doesn't worsen the burden that is passed on to my co workers if I have to call out or go on disability - it SHOULD, but in reality it doesn't.

                          Have you read "When Breath Becomes Air?" by Paul Kalanithi? He is a neurosurgeon who battled terminal cancer. I don't agree with all his conclusions- but I found it interesting to learn his thought process on being a human/healthcare practiconer/ patient.....
                          Diagnosed 7/11/11
                          On Copaxone 7/11- 12/13
                          On Tecfidera 12/13- current

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