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    It won't stop

    Hello. I haven't posted in years. My exacerbation keeps returning. It's been months and months. I'm unable to walk. I'm enjoying the NHS experience, but not the lockdown. Staying safe.
    "'Who are YOU?' said the Caterpillar. Alice replied, rather shyly, `I--I hardly know, sir, just at present--at least I know who I WAS when I got up this morning, but I think I must have been changed several times since then.'" Alice in Wonderland by Lewis Carroll

    #2
    Well welcome back then. Sorry you are experiencing such harsh symptoms. Tell me, are you on any meds? Able to walk with a walker?

    I agree, lockdown ain't no fun.
    The future depends on what you do today.- Gandhi

    Comment


      #3
      Hi TXGRL.

      Have you been able to see your Neurologist? Have you been able to see a Physical Therapist, or exercised as tolerated? Used Steroids?

      Exacerbations can last awhile, but it is possible for recovery to take longer. If mobility is affected Physical Therapy and/or exercise can be helpful.

      Take care
      Diagnosed 1984
      “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

      Comment


        #4
        Thank you all for responding. This relapse is identical to my first one in 2006. I had 3 rounds of oral steroids for exacerbations leading up to this one a month ago (they don't give intravenous steroids in the UK) I have spoken to the MS nurse several times this last month. I was due to start Ocrevus, until the MS Society prohibited it. I'm on Tecfidera now. My neurologist is one of the best in East Devon, and and is aware of my condition. I will get Ocrevus when allowed. I'm doing whatever stretches I can manage. I've used the available physiotherapist previously. Just waiting, keeping stretching, standing up with assistance when I can manage.
        "'Who are YOU?' said the Caterpillar. Alice replied, rather shyly, `I--I hardly know, sir, just at present--at least I know who I WAS when I got up this morning, but I think I must have been changed several times since then.'" Alice in Wonderland by Lewis Carroll

        Comment


          #5
          Sorry to hear about your frequent flares.

          In addition to traditional treatment, you might want to consider some alternative options, such as acupuncture, the Wahls diet, etc. Those aren't quick fixes, but might make a difference.
          ~ 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


            #6
            Hello TXGRL and welcome back.
            I'm sorry you are having an on going exacerbation and I hope you have some relief soon.
            God Bless Us All

            Comment


              #7
              Welcome back TXGRL, but sorry to hear of your recent flare. Is it possible to get another round of oral steroids to calm things down a bit? Here's hoping you can manage through all this.
              1st sx '89 Dx '99 w/RRMS - SP since 2010
              Administrator Message Boards/Moderator

              Comment


                #8
                Waiting...

                Originally posted by Seasha View Post
                Welcome back TXGRL, but sorry to hear of your recent flare. Is it possible to get another round of oral steroids to calm things down a bit? Here's hoping you can manage through all this.
                I had oral steroids March 7 and April 14th. Its only been 3 weeks.
                "'Who are YOU?' said the Caterpillar. Alice replied, rather shyly, `I--I hardly know, sir, just at present--at least I know who I WAS when I got up this morning, but I think I must have been changed several times since then.'" Alice in Wonderland by Lewis Carroll

                Comment


                  #9
                  Originally posted by Seasha View Post
                  Welcome back TXGRL, but sorry to hear of your recent flare. Is it possible to get another round of oral steroids to calm things down a bit? Here's hoping you can manage through all this.
                  GP playing phone tag with MS nurse, for more steroids.
                  "'Who are YOU?' said the Caterpillar. Alice replied, rather shyly, `I--I hardly know, sir, just at present--at least I know who I WAS when I got up this morning, but I think I must have been changed several times since then.'" Alice in Wonderland by Lewis Carroll

                  Comment


                    #10
                    Originally posted by TXGRL View Post
                    GP playing phone tag with MS nurse, for more steroids.
                    Good luck, TXGRL! Let us know how it's going.

                    I LOVE your signature
                    1st sx '89 Dx '99 w/RRMS - SP since 2010
                    Administrator Message Boards/Moderator

                    Comment


                      #11
                      Originally posted by TXGRL View Post
                      GP playing phone tag with MS nurse, for more steroids.
                      How many courses of roids have you had so far this go round?

                      A good stretch routine can't be beat. It's always the go to...
                      The future depends on what you do today.- Gandhi

                      Comment


                        #12
                        Originally posted by Boudreaux View Post
                        How many courses of roids have you had so far this go round?

                        A good stretch routine can't be beat. It's always the go to...
                        One round oral steroids, and not allowed anymore.
                        I am doing stretches daily.
                        "'Who are YOU?' said the Caterpillar. Alice replied, rather shyly, `I--I hardly know, sir, just at present--at least I know who I WAS when I got up this morning, but I think I must have been changed several times since then.'" Alice in Wonderland by Lewis Carroll

                        Comment


                          #13
                          SPMS

                          Originally posted by TXGRL View Post
                          One round oral steroids, and not allowed anymore.
                          I am doing stretches daily.
                          So my neurologist told me a year ago I was 'slowing up.' Wow that was an understatement! I had no idea the transition from RRMS to SPMS could be so quick. I guess he doesn't like giving bad news. This decline has been so gradual, and small improvements like being able to bend my left foot are treasured. Husband is supportive and I got to meet a community Matron(UK) who is dealing with social services and my GP. I'm going to get a scooter/wheel chair on loan when I can get downstairs. I might take many months to a year, but it's a plan.
                          "'Who are YOU?' said the Caterpillar. Alice replied, rather shyly, `I--I hardly know, sir, just at present--at least I know who I WAS when I got up this morning, but I think I must have been changed several times since then.'" Alice in Wonderland by Lewis Carroll

                          Comment


                            #14
                            Hello TXGIL,

                            I am glad you are going to get a scooter/wheelchair but I hope you get it much sooner.

                            Hoping you start seeing some improvements and I wish you all the best.
                            God Bless Us All

                            Comment


                              #15
                              Originally posted by REG53 View Post
                              Hello TXGIL,

                              I am glad you are going to get a scooter/wheelchair but I hope you get it much sooner.

                              Hoping you start seeing some improvements and I wish you all the best.
                              Thanks, but I'm still "shielding." Going nowhere fast.
                              "'Who are YOU?' said the Caterpillar. Alice replied, rather shyly, `I--I hardly know, sir, just at present--at least I know who I WAS when I got up this morning, but I think I must have been changed several times since then.'" Alice in Wonderland by Lewis Carroll

                              Comment

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