HELLO AGAIN EVERYONE

I know that I haven't posted in a long time, but things have been crazy. On March 7 my husband had a full left knee replacement and I stayed with him in the hospital, then we got home and it was my turn to play caretaker. It wasn't easy to do everything and I was exhausted. I had had a flare before he had the surgery, and finally about 2 1/2 weeks ago I had a full-blown relapse which required a 5-day round of Acthar. I wasn't able to walk for a couple of days, even with a walker, then I started to be able to walk with a walker and finally last Saturday I was able to go back to the cane. MRIs showed no new lesions in February, but I don't know about now although the neuro doesn't seem to want to repeat them. I'm going now to get back on my horse, and I'm back in PT, both land and aqua. It also affected my arms this time, so I'm back playing with blocks and putty and the rest of it. Has anyone switched to the new Ocrevus from their prior DMT for RRMS? My doctor had mentioned it, but I just saw new studies that show that Tecfidera is working extremely well and seems to be outpacing even Gilenya which I was put on first and which I thought was fantastic until it ripped up my stomach. So I am not sure what I want to do; I've been experiencing several flares per year and about one full-blown relapse which has required Acthar but it doesn't seem to result in new lesions.

13 Replies

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  • Sukie427 so sorry for your worsening symptoms but glad you seem to be having some improvements. If I recall, getting back on the horse is more than figurative for you so that's wonderful! I can't tell you about the meds. Hope you continue to improve

  • So pleased that you are now able to get back on your horse. How is your husbands knee doing? Did you have a good birthday? Can't help with the meds, sorry, blessings Jimeka 🦋 🌈

  • Hi, Jimeka. Thanks for the kind words. He is doing great. He exercised like a dog after the surgery and he no longer needs the walker and he is at 133 degrees of flexion at only 8 wks post-op. My birthday weekend was wonderful. He surprised me and we went to Las Vegas and saw Steely Dan, who put on a terrific show.. Hope all is well with you!

  • Wow, what a birthday. Pleased your hubby is doing well. Have you got back on the horse yet and how is your back doing? Did you see your birthday card that we all sent you? Blessings Jimeka 🦋 🌈 🐎

  • Hi, Jimeka. Yes, I did manage to ride on Thursday, and I rode English because I am having some issues with my Western saddle. Great ride, except for at the end when I tried leaning over the horse's neck to open the arena gate and lost my balance and fell again. Fortunately, it was only on dirt and not sharp rocks this time so the only things that're bruised are my butt (or bum, as you say in the UK) and my ego It's just so hard to recognize your limitations, as you know. Even as I was doing it I kept saying to myself, "Get off the horse first" but of course I didn't and got a bad result. Why is it that in our heads we all think that we're still 17 when our bodies are 4 x that (or more)? I just can't get it through my head that I can't do the things I used to do. My back, however, is fine; the fracture has healed completely but arthritis has moved in so I have some pain but unless it's really horrible, which it hasn't been, I ignore it. I actually haven't seen the BD card but I am way behind on my emails so I'm sure I will get it as I plow through it all. Thanks for thinking of me!

  • Hi Suki, I am actually quite jealous of your ride, don't misunderstand me I am thrilled for you. It would be heaven sent if I was to ride again, I often reminisce about when I would just saddle up and me and my horse Flicka would ride for miles down all the back country lanes. She was my best friend, because I could tell her anything and she never told a soul! Anyway your card was posted here on the forum, not an email. Enjoy, sorry about the fall but we live and learn even at our age. Blessings Jimeka 🌈 🦋 🐎

  • What great memories you must have of those times with Flicka! Stormy is my best friend as well--not only does he nuzzle me and lay his head on my shoulder, he understands me. If it weren't for him, I would not be walking now. He is very smooth gaited (he's a paso fino) and he knows if I am not feeling all that well and is very careful with me. We have great chemistry and some of my most peaceful times have been riding alone together. I am sure that the same is true of you and Flicka. Animals are much more intuitive than humans. Have a great week and feel great!

  • Welcome back Sukie427, it's good to hear from you again! Tell your husband we wish him well and try to slow down your self before your relapse gets even worse. It's good to hear you're back and you're riding your horse again. Keep up the good work because both are very important in your strengthening and recovery. I was on Tecfidera for almost two years. I was so excited at first about having an oral pill instead of taking injections. But unfortunately after 2 years I noticed I was starting to decline in my Ms. Upon researching I discovered that Tecfidera had let me down and I had quite a few new lesions in my brain and on my spine. I am now anxiously awaiting Ocrevus. My neurologist wants me to get on it but he has to wait to get the forms necessary at his office to apply for his patients to receive the drug.

    I look forward to talking to you again soon. Remember that we are together we are stronger. Until we speak again please slow down and take care of yourself as well as your husband.

  • Hey Sukie427 so sorry to hear about your husband and your relaspe! Pretty sure you just need to be tied down some where! It's great your getting back on your horse again!☺ Just be careful!!

    Jes 🌠

  • Hi, Jes. Nice to hear from you! Well, the riding went very well until the end. I tried leaning over the horse's neck to open the arena gate and lost my balance and fell again. Fortunately, it was only on dirt and not sharp rocks this time so the only things that're bruised are my butt and my ego It's just so hard to recognize your limitations, as you know. Even as I was doing it I kept saying to myself, "Get off the horse first" but of course I didn't and got a bad result. Why is it that in our heads we all think that we're still 17 when our bodies are 4 x that (or more)? I just can't get it through my head that I can't do the things I used to do. It's funny how when I am asleep and dreaming I am never walking with a cane or a walker and I have no problems at all. I never see myself in dreams as even having MS. And if I start to dwell on it too much I get a headache--it's kind of like thinking about space and if it ends or doesn't end and what it is, etc.There just doesn't seem to be any answers, and that drives me absolutely nuts. Maybe I need to see a therapist who can teach me to act my age!

  • Hey Sukie427 so sorry to hear about your husband and your relaspe! Pretty sure you just need to be tied down some where! It's great your getting back on your horse again!☺ Just be careful!!

    Jes 🌠

  • You were missed, Sukie427. I'm relieved you (and your husband) are doing better after such a rough time. Hopefully you'll be back on that horse soon. Just take care. You've been through quite a bit lately. Rest! And a warm welcome back.💕

  • Sukie427, you've sure had your plate full! I'm sorry you've had so much to deal with all at the same time. What resilience and determination you must have to be coming through it all.

    I can't offer any insights on the DMTs, but I'll be praying you find the right one for you. Keep us posted!

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