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    Hospital Stay!

    Hi Friends-I have not posted in a little while and wanted to share something that happened.

    I was in the hospital for 6 days last week-not fun. I had a severe relapse this time which affected my walking, talking, leg strength, and had numbness on right side of body and tightness in my face. I was very weak not just in my legs but all over. I got 3 days of solumedrol IV infusion while at the hospital then started a tapering steroid tablet pack. After one day of solumedrol infusion, I already noticed a difference.

    I thought when I was in the hospital "how the heck did I end up here? Very scary! But there was hope too.

    My speech was affected this time cuz it was hard to articulate my thoughts or words and I would get extremely frustrated. This improved a lot after 1-2 days at the hospital, but the physical and mental fatigue did not help this situation. Geesh!

    Over the course of 3 weeks or so, the fatigue got more extreme and right side numbness was creeping in. The numbness I feel normally is like someone has put blood pressure cuffs around my arm, foot and leg and pumped it up. It is a weird sensation; however; I still feel touch in the areas.

    The first two days in the hospital was like learning how to walk again. With the aid of the nurse, I slowly shuffled to the bathroom with a walker and had a lot of body soreness & spasticity all over. Then 2 days later, I was determined to walk down the hallway without the walker and put my hand on the railing as support when needed so that worked well. I waved to the nurses as I walked by...ha! But talking about baby steps-this sure was!

    Then the last few days at the hospital, I felt stronger and could walk very slowly without a walker at times. When I got home I used a cane around the house for the next several days and still do at times. I have been resting a lot since I have been home and it has been very hard on my family to see me like this especially my 9 year old son. I don't like it, but I know it is part of the recovery process. They are used to seeing me lie down everyday anyway because of fatigue, but this is extreme.

    I have had many relapses the past 1 1/2 years (5 relapses) but the other ones except one relapse a year ago were milder when I was on the medicine and I have never been hospitalized for MS-just ER visits before.

    I believe the culprit was being taken off my MS medicine a few weeks back to do a 30 day cleanse before I go on Tysabri infusion early April. I think the relapse was brewing at that time anyway and going off of the meds just made everything worse. I don't blame the doctor, but I know I just need to clear my system out so I understand that.

    I am walking again now slowly, but still do not have full strength in my legs. They get weak very quickly at times. And I know I better sit down or lie down before I fall down. I hope that improves soon.

    I have RRMS-diagnosed in Nov 2013 but doc thinks I had MS already a few years before because of eye issues and fatigue.

    Well, I will keep you posted on the progress of this and hopefully it can help anyone who has struggled with a lot of relapses or when you feel like you have just hit "rock bottom" with MS because I sure felt that way and still do at times.

    Take care-Nikki
    Nikki

    #2
    Stay well.. I'm on day 4 of steroids. This stuff is awful.

    Comment


      #3
      You are not alone in this

      I have SPMS. I too take Ty, been on it for 32 months. I just had a major relapse, transverse myelitis. I am JCV+. I had steroids in the hospital, but am still unable to walk. I have a cool new wheelchair. I hope you continue to improve.

      Take care
      Lisa
      Disabled RN with MS for 14 years
      SPMS EDSS 7.5 Wheelchair (but a racing one)
      Tysabri

      Comment


        #4
        Sorry to hear of your severe relapse and the frequent relapses that you've experienced recently. Hopefully, the Tysabri will be more effective at controlling their fx.

        Glad to see you back.
        ~ 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


          #5
          Hi Lisa-so sorry to hear about your relapse too. I hope you can regain your walking very soon! It might take some time but I believe you will get there...These relapses are something else, huh?

          When I was sitting in the hospital on edge of bed-my legs were so weak so I tried to do slow leg lifts by lifting one leg up at a time in front of me...I did like 10 sets each a few times a day and it seemed to help a lot with strength. It took all my energy out of me the first 2 days to do this, but it improved. Not sure if you can do that right now, but give yourself time.

          P.S. I am also JC+ kind of borderline (0.39) but doc will monitor me every 3 months for blood work and MRI's. Do you get that done too?

          Please keep us posted on your progress! Nikki


          Originally posted by 22cyclist View Post
          I have SPMS. I too take Ty, been on it for 32 months. I just had a major relapse, transverse myelitis. I am JCV+. I had steroids in the hospital, but am still unable to walk. I have a cool new wheelchair. I hope you continue to improve.

          Take care
          Lisa
          Nikki

          Comment


            #6
            Don't beat yourself up about delaying the TY. I am on TY and today was my 5th IVSM and tomorrow I start a taper. Have ON.

            No DMD is guaranteed to stop flares completely. But I do believe they decrease the frequency. I was having many flares too. Now I am averaging one a year.

            Get well...and start the TY. For me TY has helped a lot even though I have had a few setbacks. So lets hope it does wonders for you.

            Seems a lot of us recently here are getting IVSM. Heres to hoping everyone is on the mend and if necessary adjusting to a new normal.
            Katie
            "Yep, I have MS, and it does have Me!"
            "My MS is a Journey for One."
            Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

            Comment


              #7
              HI Nikki - just wanted to peek in and say how sorry I am to hear you landed in the hospital, but glad you're on the mend. Many of us understand about taking baby steps towards recovery! I hope TY works well for you
              1st sx '89 Dx '99 w/RRMS - SP since 2010
              Administrator Message Boards/Moderator

              Comment


                #8
                Hi Uli1515-

                Hope you feel better soon!


                Originally posted by uli1515 View Post
                Stay well.. I'm on day 4 of steroids. This stuff is awful.
                Nikki

                Comment


                  #9
                  Hi Mamabug-thank you so much....I have always admired your positivity!

                  Originally posted by Mamabug View Post
                  Sorry to hear of your severe relapse and the frequent relapses that you've experienced recently. Hopefully, the Tysabri will be more effective at controlling their fx.

                  Glad to see you back.
                  Nikki

                  Comment


                    #10
                    Katie & Seasha-thank you as well. I really appreciate everyone's reply.

                    Katie-so glad to hear the Tysabri is working well for you! That is my goal too to reduce the relapses even to one or less a year would be greatly manageable. I would be so happy. It seems like after each flare (mini or big) there is an additional symptom or 2 that wants to stick around. I would just like to push it away.....

                    Thanks!
                    Nikki

                    Comment


                      #11
                      Originally posted by Nicoly3467 View Post
                      Hi Mamabug-thank you so much....I have always admired your positivity!
                      Thanks, Nicoly.
                      ~ 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


                        #12
                        IMHO doing washouts while changing drugs is not right. So many people seem to get bad relapses during this time. There is no proof that our bodies need washing out. The doctors do it so they can document the effectiveness of each drug separately. Also, letting a patient have 5 relapses in 1 1/2 years before putting them on Tysabri should not be happening.

                        Sorry for the soapbox but I encourage people diagnosed with MS to demand a more aggressive treatment if theirs is not working.

                        Nicoly,

                        You sound very brave. I admire your efforts to climb back to normal. Thank goodness you are still RRMS. I wish you the best in in your recovery.

                        Comment

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