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Hello! Diagnosed Sept 2017

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    Hello! Diagnosed Sept 2017

    Hi, I'm Jenn. I have been milling around in this forum for a few months trying to get answers and more info. I thought I would post my story in case it helps anyone, even a bit. It seems this MS thing is quite mysterious and effects everyone differently.

    I find myself lucky to have gotten such a quick diagnosis based on some of the horror stories I have read about people not knowing what is going on with them. I also feel lucky that the MS drugs have come such a long way from what I have read. I normally avoid taking meds at all costs but I really don't feel like playing Russian Roulette with my brain and spinal cord. I am married with 3 daughters; 26, 16 and 2. I had my 1st injection of Tysabri on March 6th, 2018. So far so good.

    It started on a Wednesday, my right side of my face by my nose and lips went numb and by Sunday my entire right side of my face and upper half of the back of my head was numb. I decided to head to the hospital because I knew I needed some kind of answers and I wanted them quickly. After a ton a bloodwork, a spinal tap, a cat scan of my head, an ultrasound of my neck and heart and an MRI I got my diagnosis. I did not have any other symptoms except frequent urination, a tiny bit of leg burning and I did feel the MS hug a couple times. After 3 days of IV steroids I left the hospital on the following Wednesday. The neurologist just flat out said that I have MS and left me speechless. Although I had heard MS a million times, I had no clue what it was. He said to Google it. What an ******* he is...

    I came home from the hospital Wednesday, Sept 13th expecting to go back to work the next day. I was in for a rude awakening! I woke up with pain in my head that scared me so I took pain med and went back to sleep. That went away but other things started happening. Brain fog, stumbling, crazy fatigue, arm band pain, pains in my head, leg burning. My head was still numb, I kept biting my cheek. Some days I could barely put my make-up on or I would get ready to "do something" and would be too tired once I was dressed! I didn't go back to work until October 10th when everything started to settle down and I wasn't stumbling and the brain fog subsided.
    Once I got back to work I still had a bit of facial numbness and had a lot of muscle spasms, under my eye would twitch along with my right lip. Then my back started getting numb in certain spots and tingling. The arm band of pain would come and go. Now, today, I experience daily: leg / feet burning, back numbness and tingling, it feels at times that the inside of my back is pushing out in spots, right side face tingling that comes and goes. Balance seems fine, occasional brain fog but not bad. I seem to be more moody and emotional.

    I don't know if these current symptoms will go away. That is the mystery of MS. You never know what is in store. I choose to live my life as normally as I can and not spend my time worrying for what "could happen" but sometimes the thoughts creep into my head.

    Thank you listening! I wish everyone the best, Jenn
    Sometimes it feels like we won't make it through
    But the hard times pass like the good ones do
    DX September 2018 / Tysabri started March 6, 2018

    #2
    Welcome to MSWorld, Jenn! Glad you were milling around here to read others experiences and to finally share yours with us. Yes, MS is a MyStery! Most of us have a certain amt of symptoms in common, but when you think of our complex brain workings and numerous neuro pathways, it a wonder that some of us share commonalities, yet many of us do not.

    It's good to hear you are on Tsyabri soon after being diagnosed. I'm a firm believer that hitting it with "bigger guns" in the beginning will help in the long run. Me? I was not so lucky, but for others, I'm glad we have so many better choices now.

    It's perfectly normal to have differing thoughts creep in about your future. We all share in that. Thanks for sharing your story and hope we can be of more help when you need it.

    Wishing you the best too!
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      Hi Jenn and welcome!

      Thank you for sharing your story with us.

      Wishing you great success with Tysabri, as it seems to be helping so many.

      If you have any questions, just ask and we'll be glad to help, if we can.

      Also, when you need to vent, we'll be here to listen and understand.

      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


        #4
        Hi Jenn,

        Your MS diagnosis was so shocking for you, as it would be for anyone. I am so sorry. The lack of empathy your neuro demonstrated was shocking, too. Forgive him if he is too busy to be more human; time will change him.

        But I give him lots of credit for starting you on Tysabri. IMO, that is precisely the right DMT for the sudden and dramatic symptoms you described. I'm sure other factors entered into the treatment choice, also. He may lack bedside manners but he doesn't seem to be lacking treatment skills.

        Along with many others, I believe it is best to hit MS early and hard. Tysabri does that brilliantly. There are many testimonies to that effect right here at MS World.

        Mathematically speaking, it is more probable that you will stabilize and recover function on Tysabri than most other DMTs. And, with a great deal fewer side effects than other DMTs, too. Many taking Tysabri experience few or no side effects. My wife was one of those. She was on Tysabri from 2002 until 2017, except for one year when it was not available. She transitioned to Ocrevus last year and continues doing very well.

        Jenn, lots of MSers have taken Tysabri for many years with great success. As the MS symptoms you have been experiencing slow down you will begin recovery and you will begin feeling better. Your brain will begin figuring work-arounds of damaged areas (lesions) using something commonly termed "neurological reserve".

        The beauty of Tysabri is that it is so effective in slowing or halting inflammation and new lesions that it gives your brain opportunity to recover and develop new pathways using neurological reserve.

        Warning... If the brain exhausts its neurological reserve, that is when someone with RRMS transitions from relapsing-remitting MS to secondary progressive MS. Please understand that point, won't you? Therefore, it is critically important to get on the most effective DMT as soon as possible; delaying the progression of MS as long as possible or, even halting progression.

        I believe you will recover far, far, more than what your present symptoms may suggest to you. Years ago for a brief period, I spoon fed my wife and helped her with every bodily function. Today, she leads Silver Sneakers and Yoga classes at the local YMCA. We believe she is able to do that because she was fortunate enough to get on a very effective DMT, Tysabri, during trials and stay on it for 15 years. She never got a new lesion on Tysabri and her brain obviously figured ways around the damaged areas.

        Tysabri is the same choice you and your neuro made, so congratulations! I believe you will have the same results, too! Believe it, girl, you are going to get better...much, much, better and become the dynamite grandmother you will surely be!

        Comment


          #5
          Jenn1976,

          Welcome! I, too, am recently diagnosed and have found this forum so helpful. I start a DMT very soon. I know what you mean about thoughts of what could be, creeping in. It's hard to stop those thoughts!

          Best of luck to you!
          DX 3/2018; started Ocrevus 3/30/18 (EDSS 2.5)

          "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."
          - 2 Corinthians 4:16

          Comment


            #6
            Thank you, and good luck with whatever med you get on!
            Sometimes it feels like we won't make it through
            But the hard times pass like the good ones do
            DX September 2018 / Tysabri started March 6, 2018

            Comment


              #7
              Thank you, everyone!
              I appreciate everyone sharing their thoughts and responses with me.

              Side note: The original neurologist did not put me on Tysabri. He handed me a script for Copaxine and sent me on my way. I didn't try the Copaxine because I knew the neurologist did not care about my MS and was not up-to-date on treatment options. Luckily, I knew better and immediately found a proper MS doctor who went over my options and thoroughly answered questions I had.
              Sometimes it feels like we won't make it through
              But the hard times pass like the good ones do
              DX September 2018 / Tysabri started March 6, 2018

              Comment


                #8
                Jenn, good for you finding the right neuro! I agree with the info others have given you. I have been on Tysabri since 10/ 2006 and have now been getting infused every 56 days (instead of 28) for a few years.

                I did want to add that somewhere between my 4th and 6th infusion I saw some of my symptoms start to abate. My MRIs have shown no new or active lesions and I have led a good QOL. I am now 69 years of age I was diagnosed 1988.

                Good luck and best wishes!
                Linda

                Comment


                  #9
                  Originally posted by Seasha View Post
                  ...
                  It's good to hear you are on Tsyabri soon after being diagnosed. I'm a firm believer that hitting it with "bigger guns" in the beginning will help in the long run. Me? I was not so lucky, but for others, I'm glad we have so many better choices now.

                  ...
                  Welcome, Jenn. I agree with Seasha. I was also not so lucky. It took almost 2 years for me to be dx, so no meds at all then. Next, I started on Betaseron, which, for me, was not effective. However, my neuro didn't take me off and try something different. Then, after switching to an MS Specialist, she put me on Copaxone, which worked well for me for a lot of years. The newer meds weren't out at that time, but, it may have been a good idea to switch to the "bigger guns" after they were.

                  But, the past year or two or three, I've begun to notice a lot of decline in my mobility and stamina. I'm 55; have had MS for 16 years. Probably transitioning from RRMS to SPMS.

                  I hope your current symptoms will go away. They often do. You're still in the early stages of RRMS.
                  ~ 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
                    Your Story is Similar to Mine - Also Debating what DMD to Do - New to Forum

                    Jenn - I read your story and just want to encourage you to stay mentally strong and fully resolved that "this too shall pass." I was diagnosed at 26 and am now 58. I have had sporadic nuisance attacks, but in the 32 years since I was diagnosed have only been treated with Prednisone for ~10 days at a time on 5-7 occasions to calm down the inflamation.

                    I am told I have RRMS and when I was diagnosed I do not recall there were even injections available. Now there is an array of drugs, thankfully including oral therapies. You are blessed to have children and I hope you can draw strength from the fact that you have a family and that will keep you laser focused on fighting the MS battle. I do not have children but my husband and I are both in good health and we expect to do lots of cool trips when we retire. I still manage a successful career with high energy and MS, while occasinally annoying, has never impacted me living life on my terms.

                    Now, with 32 years of a vitamin focused, faith driven resilience, I must make the choice, bc my neuro says so, to get on a DMD. She recommends Aubagio. I am skittish bc of the hair loss, but I will not let my vanity get in the way of accepting I have had a really blessed run with regard to health and I do not want to spiral at my age. I also asked about Tysabri (my go all out approach) and she said she will give it careful thought.

                    Do your research, talk to your neuro, and never allow the "what ifs" of MS to settle into your brain. I truly believe our bodies follow the path our minds put forward. All the best to you Jen and your family! MS is new to you, but don't let it get tell you what to think or do for your future. I believed I could, with God's grace, own it and control it, and so I have, with thanks to God every day.

                    For all those that have the more intrusive forms of MS, I say your courage is amazing and inspiring. God Bless All!

                    Comment

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