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First Relapse in 6 Years

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    First Relapse in 6 Years

    Hi All,

    It has been 6 years since my last relapse, but I guess all good things must come to an end eventually. My right leg is giving me serous problems and the nerve pain is particularly unpleasant. I forgot how bad a relapse can be and how all controlling it is. I have been on bed rest and have taken to using my wheelchair instead of my rollator.

    I fell, although I managed not to do any real damage. Still it was a blow to my ego and my confidence. But using my wheelchair has restored my sense of safety.

    Here is my question: Do I need steroids to recover from this relapse? I would like to avoid prednisone or solu-medrol if at all possible, even if it means it will take me a little longer to recover.

    I have a scheduled teleconference with my neuro on May 5th, and I am hoping he will not insist on a 3 day cycle of solu-medrol, but I am preparing myself for it. Has anyone here recovered from a significant relapse, without steroid treatment? How long did it take you to get back to your baseline?

    Thanks, as always
    Dar
    DAR
    R/R 1993
    Draw close to God and he will draw close to you. - James 4:8

    #2
    Hi Dar!
    I'd been wondering about you. I'm glad you found your way to this new place.

    That's a shame about your relapse and the fall though! I'm wondering if it's really a relapse? Is there a possibility it might be sciatica?

    I've had several bouts of sciatica, and at one point my primary care doctor called it a flare and gave me a prescription for steroids. I opted not to take the pills and just let time go by while I went to physical therapy and eventually the pain subsided, though it was bad enough at times to make walking impossible. But it did take weeks for it to calm down.

    I don't think solumedrol is used much now. People do report being helped by steroids. I'm just wimpy about taking medicine and tend to think that if I wait something out, it will go away. However, there are some situations that are so bad that I wouldn't be able to sit them out.

    I'd be really surprised if a neuro would prescribe solumedrol on the basis of a teleconference. There would be a need for an in-person exam, to see what reflexes were working or not working, etc., before prescribing. Or at least that's my opinion of what a neuro should be doing.

    I hope you'll find a good solution to these new problems.
    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

    Comment


      #3
      Hi DAR, am sorry you are suffering. I also echo agate and wonder if it is sciatica?
      Can you see your neuro in person?

      Comment


        #4
        Hi Dar,

        So sorry to hear you are not doing too well. I tend to agree with Agate about solumedrol. I haven't taken it in many years. I have had a number of flares, but if I just wait long enough I seem to come out of the flares, however I have had gradual progression throughout these years and I am not able to do nearly what I use to do. I kind of think there is a difference in a flare and progression. Sometime I have a hard time telling the difference though.

        I hope your Neuro will have some better thoughts on this when you talk to him on the 5th. I also hope you will not have any more falls. I had one on my back steps going out to empty my recycling and it really scared me. It also made me aware of the fact that I am progressing because I should not have fallen where I did.

        If I were you I would try to stay on bed rest as long as you feel you should, unless your Neuro tells you otherwise. When I feel I am in a flare I try to get lots of rest.

        Keep us informed as to how you are doing. So glad you found us on our new, updated forum.
        Virginia

        Comment


          #5
          Hi again. I have been on this new web site, since it began. Just wasn't posting until today.

          I really don't know anything about sciatica, I just know this problem was exactly like the problem I had back in 2015. On the up side, we decided to test out my leg strength and balance today. I used my rollator and managed to take a few steps from my bedroom to the living room and back again. Sure felt good to stand up straight and walk around. I'm hoping I will get better and walk for longer periods, as time passes.

          Great to read that solumedrol isn't prescribed as much as it was in the past. I would sure prefer to just rest and wait for my body to heal on its own. I don't think it is progression, as this time, I was very stressed out this past year. I feel like it all caught up to me and the old problems returned.

          Thanks for all your thoughts, it has given me other things to consider.
          DAR
          R/R 1993
          Draw close to God and he will draw close to you. - James 4:8

          Comment


            #6
            Hi Dar,
            glad you are making decisions and see a path forward. It feels great to hear from you.
            if I remember, the point of solumedrol was to end the flare before it does more damage. Today I saw my neuro and I asked for Ritalin because I can not follow a thought through to the end of it. My brain is exhausted and I have used Ritalin before to stimulate my thinking process.

            Hasn’t this been the longest year. I have my wheelchair out of the closet and it is in the living room so I can use it around the house but I do not take it with me when I go out...just the 3 wheeled rollator. I am still farming and going to one farmers’ market a week. Remember SSusan used to come to that market and help me. She stopped coming a few years ago...customers still ask about her.

            take care
            linda
            Linda~~~~

            Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"..

            Comment


              #7
              Hi Laz, I always look forward to hearing from you. Yes, I do remember Susan working with you and how knowledgeable and popular she was. I know she misses going as much as you miss her being there. She put the same passion she had as a teacher, into her work at your market. That's how it is with the "good ones", they are successful at whatever their passion resides and they are always missed, if they are not around.

              You know, I was thinking about taking my Adderall, just to see if it could help. I must take my dosage very early in the morning if I want it to leave my system by 11:00 pm, but I think it might be beneficial to at least give it a try.

              I forgot to mention that this time around I have had trouble with my eye-sight. Slight pain in the corner of my eyes and the printed page was very blurry and look faded and washed out. It made reading very difficult. I am glad it is now clearing up and reading is more normal.

              I hope you are able to continue going to the market once a week, I think you are amazing for still being able to do so. Be careful and take care, my friend.

              Dar
              DAR
              R/R 1993
              Draw close to God and he will draw close to you. - James 4:8

              Comment


                #8
                I am pretty sure that my MS specialist would recommend a course of steroids as soon as possible! You want to stop inflammation Asap, before it causes permanent damage. This has been the advice from all the MS specialists I have had at academic hospitals associated with medical schools

                Comment


                  #9
                  Yes, I agree. My neuro is also a MS specialist, and has a great reputation. I am prepared for the fact that he will probably recommend the solu medrol. He previously told me that if I ever suffered a relapse, to just call him and he would send out a nurse to get me started on a 3 day course. That was before the pandemic, so I wonder what the procedure will be. Since I am not walking well, I hope I won't have to worry about getting to his office. Right now there is no way I could travel to see him. I should be talking to him on Wednesday.
                  DAR
                  R/R 1993
                  Draw close to God and he will draw close to you. - James 4:8

                  Comment


                    #10
                    Dar, hope you are soon feeling better. Let us know what your Doctor has to say about solumedrol.
                    Virginia

                    Comment


                      #11
                      Okay Virginia, will do.
                      DAR
                      R/R 1993
                      Draw close to God and he will draw close to you. - James 4:8

                      Comment


                        #12
                        Hi Folks,
                        Just finished by video-conference with my neuro. He wants me to begin a 3 day solu mendrol IV cycle, either tomorrow or the day, which a nurse will set up here at home. He is hoping the steroids will help and he suggested I do some rehab afterwards, which he will also set-up for me in my home. He said if I don't respond to the steroids he would like to put me in the hospital to run more MRI's to make sure there is nothing new, lesion wise. But if I respond as quickly as I have in the past, then I won't need to have any new MRI's taken. He does want to discuss new treatments with me after I get better, since it has been a long time between medications. Ocrevus was the last med I took and that was back in 2018 or so. I was happy he agreed that I didn't have to get a prednisone taper. The last time I had one, it was really rough on me and I would rather not repeat the experience. Okay, that's about it for now. just wanted to let you know how it went.

                        Dar
                        DAR
                        R/R 1993
                        Draw close to God and he will draw close to you. - James 4:8

                        Comment


                        • Lazarus
                          Lazarus commented
                          Editing a comment
                          Great you are getting treated at home. I did that for 4 years and it was great. The same nurse mostly came and she loved my dogs! I stopped because solumedrol stopped working for me but, when it worked I was Superwoman! I think kesimpta? Sp. is a version of Ocrevus that is something you can do at home...give yourself a shot..
                          Good luck to you.

                        #13
                        Dar, you should be getting better soon. As I understand what you are saying, you respond well to solumedrol. I did not so I guess that may be the reason they stopped giving it to me. Glad they are coming to your house. I hope you are able to decide on a new treatment when the time comes that will do you the most good. That is a hard one. Counting on the steroids for you!
                        Virginia

                        Comment


                          #14
                          Dar, I'm so glad your neuro is willing to do things by video-conference and arrange to have the solumedrol done at home. And this is going to happen soon--that's really good news!
                          SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

                          Comment


                            #15
                            Yes it is great. I'm not as anxious as I was before I spoke with my neuro. I feel my leg weakness worsening, so if I had any doubts that I need help via the solumedrol, I don't any longer. Now I am just waiting to hear from the nurse so that I can find out when he/she is coming. Hopefully it won't be late in the day, or I'll will be up all night. Thank you all for your supportive words, it is truly appreciated. I'll keep you posted when I hear from the nursing company.

                            DAR
                            R/R 1993
                            Draw close to God and he will draw close to you. - James 4:8

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