Hello all, it's that time again. I would first like to take a moment to welcome all the newcomers to the forum. I have been in a hermit stage for the past few months. Sometimes I just need to withdraw into myself, just how I am. I am easily overwhelmed by this life, with all the pitfalls and struggle of MS. Battling depression and pain is a constant in this life of mine. Earlier this week I passed my 1st year mark with Ocrevus. I had a follow up with my Neuro/specialist on Tuesday. I was actually due for my infusion on the 14th, however we decided to push it back a few weeks. For me, I do pretty well for a couple days following my infusion. Then it all falls apart, I crash for 4 to 6 weeks following. It completely wipes me out with no strength or energy. Yes, even more so than my already small energy levels. This has been a prominent side effect of Ocrevus for me. It's a small price to pay for the benefits I am receiving. I have had, thus far, no new progression or relapse. I have had some reduction in spasticity, gains in strength as well. They are small gains, its slow going with them, however they are still there. That is very uplifting. I have some restored hope for the future, that's priceless! We have pushed my next infusion date back to the begining of June and are also going to push the next infusion to the begining of 2019 as well. I was unable to spend time with my friends and d family over Thanksgiving, Christmas and New Years this past year. Due to my downtime following my infusion, so we are taking steps to avoid that again this year. My Neuro also is going to start me on Provigil, my insurance does not want to approve it thus far. My doctor said he would deal with them so i'm awaiting approval at this time. Hopefully it will help with my lack of energy. That has been one of the larger hurdles in working toward my physical condition and therapy.
As for my depression, both my Dr and I agree, I don't do well on antidepressants. As a matter of fact all of them that have been tried have had the oposite effect for me. So the game plan on that is if I get to where I can't overcome the blues, I am to seek therapy first off, or get to feeling I want to go play on the railroad tracks, then I am to call him and we will start trying some other stradgies. I think a lot of my depression issues stem from my grief, isolation and just plain feeling worthless and alone. When I can see the beauty in life, it doesn't seem to bother me as much. When I get into that space of nobody likes me, nobody loves me, nobody wants/needs me, Im gonna go eat worms space.... Well .... I get to just wanting to it all to be over and done. As my Dr and I talked, he and I discussed that depression tends to go hand in hand with MS. So I'm working on some new coping strategies. Along with playing my harmonica, I can't think of a much better way to work out my blues.... 😁 making positive progress is a definate help with the Moody blues. My doctor and I also discussed why it was that I felt so good a day or so following My infusion, I always suspected it was due to the steroid, he said no. Its due to the Benadryl in my IV. So there's the important part of why they give that prior my infusion. This time around they are going to draw blood for a complete workup before my infusion, so praying that is all fine as well. I have had ups and downs throughout this year, trouble getting rid of infections, longer recovery times, but all in all... things are going better. It's a slow process, but the gains are definatly there. As always, y'all are in my thoughts and prayers.
God Bless Everyone,
Allen
Experience with First Round of Ocrevus
Ocrevus (financial) help
