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Dealing with a relapse

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  • Dealing with a relapse

    Yup, I ended up getting the confirmation that I am having a relapse a week ago today. This was a weird one for me, as there were subtle signs of it creeping up over the past few weeks prior, so subtle that it was easy to pass it off as the variability of MS, or not related to it. A bit more tired than usual, treadmill walking fatiguing me quickly and I would get foot slap often but not always, I was getting up more often during the night to void, but not always….. A lot of waxing and waning signs….sometimes really couldn’t gripe well on the right hand, other times very solid in my gripe. Could pump a whole tank of gas with the right hand but couldn’t use tongs at a buffet. Walking actually seemed more solid and strong…but when I stood still, often felt like I was standing on a soft surface.

    Last weekend I was skiing, and without going thru the whole saga, I noticed I was terribly fatigued right at the start of the day just doing the rather steep uphill walk on cruddy, icy East Coast snow to the chairlift. I need to use my outriggers for this and I have a shoulder issue that was also flaring up. But I was fatigued throughout my body, not just from the shoulder. And I had a very hard time squeezing the cord on the outrigger that controls retracting and extending the ski. At the top of the lift, I did a short rather flat trail that joins the downhill trail back down to the lodge and when I stopped at the top of that run, I saw that my right ski tip was already crossing over my left….something that never happens at the start of my ski day. I really suspected a relapse at this point. I had gone all of three minutes. Long story short, we called ski patrol so they could get me down safely. Once I got to the door of the lodge I could walk around the lodge in my ski boots, feeling ok. I was fine and actually feeling pretty stable the rest of the day but did not ski, drove home without a problem but again saw balance issues when I was at home later.

    So I called my neuro in the am, and went in Tuesday to see him. When he asked me to hop on my good foot, and I surprisingly couldn’t do it as well as before, I knew the deal, and then this was brought home with the tuning fork test. I have always felt the vibration in my big toes at least at first, but this time I didn’t feel anything in either toe. Yikes…..

    He treats these very aggressively, which I appreciate. I’ve completed the five day IV course of steroids at home and am now on the taper down. He told that it may be time to change the DMDs….I’ve been on Avonex and CellCept for the past 11 years and they have been holding me pretty darn well. His plan is for me to get a complete MRI set: brain, cervical and thoracic….the last two I have not had done since the Dx in 2004, just 6 month brain MRIs. Based on these results, if there is a change, we are talking about Tysabri or Tecfidera. He did blood work to rule out a UTI ( negative), and is ordering blood work to check JC virus positive/negative. He told me that if it comes out positive, he will not prescribe either drug for me. A little scary, I have to say after reading up more on this now that it may pertain to me. Now, I know Marina is on Tysabri and would love to know how you and others deal with it.

    This is new territory for me, as I have had no big drama in my life with MS up to this point. I’ve been diagnosed with what all say is a “very mild form”, and have been “ rock solid” all these years, except for slowly losing distance in my walking. My last relapse, 2 ½ years ago, wasn’t even picked up by me, but rather my PT when I just went in to say I didn’t know why I wasn’t training as well as I should be….he detected something, he sent me immediately to my neuro within the hour and my doc confirmed it …..again with the lack of feeling in the big toes. Five days of steroids, taper down, and 14 days later at my follow up, it was OVER…. And life just went on.

    So it has taken me a bit to put this in its proper perspective. I think I had been feeling a bit invincible up to this point, and this humbled me! Once I gave myself a good talk, and straightened myself out, I think I have a better handle on this new chapter. Part of being MSers, huh? But it is still rough at this point.

    The easier part of this relapse for me has been the recovery, and Re Habbing. Of course my PT has given me my work to do, and I have been finding that the strength and endurance is starting to come back. Been going back to basic hand strengthening exercises, more interval training on treadmill followed by spinning the trike on the trainer. Nothing ass kicking, but pushing myself to keep moving. Been really focusing on form with the walking, very slowly… finally got back up to 13 minutes ( I lost a bit here!!) Gave myself a 10 min break and then was able to spin for a good 35 minutes, focusing on the right side taking the prominent lead on pedal stroking. Herb also has me working on standing balance…feet wide apart, eyes open…moving around upper body as I can, bring the feet closer, play around with this, eyes closed, the whole deal. Obviously I do this with lots to grab on to if needed. Working on the one leg balancing too, shoes on and off.

    I’ve cranked back on work to be really able to focus on taking care of myself. With the East Coast snow, it is not a great idea for me to be out there right now anyway with my compromised balance, and I also really injured that poor shoulder so it needs some TLC of its own . The ability to work remotely from home for much of what I do, albeit temporarily, is really helping me not get stressed and is letting me exercise, ice and rest through the day on my schedule. Let me tell you, this has been my own personal snow storm these days!! As a treat, I am planning to spend the day on Sunday with my ski buddies….not skiing, but riding up with them, and just staying connected….. I’ll be on my second to last day of prednisone, so maybe I will even have a beer with them at the end of the day…

    I'll keep you all posted.....
    Be thankful. Dream Big. Never Give Up.

  • #2
    Veronica, I'm so sorry to hear about your relapse. It sounds like you have a good neuro that has your back. That's great. It also sounds like you are keeping your faith, which is key. I'm sending positive energy your way. Keep on fighting. Suebee


    • #3
      Thanks for saying something V, I was starting to miss your stories. Nobody can ever say that you don't put everything you've got into life. An admirable quality IMHO. Wishing you a full recovery soon,


      • #4
        Suebee and Larry, thanks for the support. It was cathartic writing this post, and yes, I am getting back to perky little me.....and the strength and endurance is increasing on a daily basis..
        Glad you guys are out there!
        Be thankful. Dream Big. Never Give Up.


        • #5
          Big hugs, Veronica. I too, was wondering how things were going. Also, about the Biotin.

          Sounds like you are doing your usual amazing keep on trucking job.

          Take very good care and keep us posted.

          Teena Marie


          • #6
            I am sorry to hear this Veronica but I have no doubt you will be back in full swing before long.

            I am also lucky in that my MS has not been very severe but I have been treating it very aggressively, I was on Gilenyia for years but 2 new small enhancing lesions (but no outward symptoms luckily) had me switching to Tysabri this summer (July I think).

            I am also JC+ (very positive) my neuro and all research I have read seems to agree that 2 years or less there is no increased PML risk for JC+ versus JC-.

            At the 2 year mark there is marked increase in risk however.

            Aside from infusion migraine (treated with 1 pill before the infusion I have felt fine. This last month I have felt GREAT, lots of energy. Not sure its the Ty by I much appreciate it!

            Just a note I really like Gilenyia as well, so I wonder if that can be an option for you?


            • #7
              Teena Marie, I felt the hug..Thanks! I truly think you are the lead Keep on Trucking MSer though!

              Things are progressing well enough here. I've sent my treadmill and inside training into high gear, and while some of this is, of course, the prednisone taper-down powering me, I feel that I am gaining alot back. Certainly rebuilding my confidence to get back up and fight. Also bumping up my fine motor drills as the right hand still has areas of weakness that need to be addressed.

              Marina, I'm very grateful for the good wishes, and for the info on Tysabri and Gilenya. I am hoping to have the blood work done next week for the JC virus, and am going to ask him to share the results with me prior to my appointment with him at the end of Feb. Since he said he will not prescribe Tysabri or Techfidera if I am JC+, Gilenya may be on his list, but I have time now to educate myself on it. Sounds like the Ty is working very well for you.......makes me happy. So, if I get on Tysabrai , does that make us soul sisters in choices of trikes AND drugs? Maybe we should get matching tatoos?
              Be thankful. Dream Big. Never Give Up.


              • #8
                Matching tats? Oh brother, we really are a band of misfits. Here's an idea:

                Dave Bexfield


                • #9
                  Loved the cartoon, Dave!
                  Now, last news on the relapse. Had my three MRIs done...Brain, cervical and thoracic all at the same time...Oh ugh, almost 2 hours in the tube.... I will NEVER do that again...I am not claustrophic, but this pushed the limit of deprivation...apart from the clang, clang, bang bang of the MRI...

                  Visit with my neurologist last week showed that I am JC negative, and that the brain shows no change from last scan, no lesions on the cervical, and a few more lesions on the thoracic than my last one, 12 years ago. No way to know when they appeared, but my doc said they are not especially problematic, but would account for my loss in ability to go the distance with my walking. Toes felt the tuning fork again ( Yeay!) and I could hop on the good foot again...(Ditto).

                  Now, he said that he really can't say for certain if this was a true relapse or a pseudo-exacerbation. He said most relapses of what he saw with me don't respond as quickly as mine did, and without any clinical evidence, he can't be certain. While he said that he feels Tyasbri is the best med for MS right now ( my type that is...) he doesn't want to change anything right now. I'm fine with that as the risk of PML really scares me. So, that is that...I feel back to baseline....walking outside seems abit stronger and easier than before, as does my treadmill work, and I know that is because I really cranked this work up to pull myself out of whatever I had. Nice reward for pushing myself. It has also really reset my motivation to increase my daily work..And I have new reasons to get as much gas in the tank as possible, too. I'll post separately about that.....the dreaded rotator cuff surgery that I am having March 7....
                  Be thankful. Dream Big. Never Give Up.


                  • #10
                    Ask for the number. Associated with the JCvirus test...

                    I am JC+ and I learned that there is a number associated with the results. I am low on the positive scale.

                    I have been doing rituxan for a few years. It really keeps me stabilized and functioning. Something to consider?

                    I did all 3 DMDs. Then IVIg for 8 years at 140g a month. Then 2years of Novantrone...
                    Early on I did a year of monthly steroid infusions.
                    There is probably more that I have forgotten.
                    The rituxan has been helpful...I am a farmer and still able to farm!