Tag Archives: Weakness

I need an evaluation date, stat!

I am not very good at waiting especially when my left arm is getting weaker and I’m having blurry vision. I need my next set of steroids but I think my neuro is going to be nervous that I continue to refuse Lemtrada.

I wish I had an evaluation date so that I can tell my neuro that I’m legitimately moving in the HSCT direction. She’s good with me being in the study, but she feels my RRMS is too aggressive to wait too long. She agreed to do monthly IV pulse steroids, which is something for now. I just wish I had that date for evaluation. I think it may put the mild Lemtrada pressure to rest.

Starting some new meds

Yesterday was a rough day. I had a lot of increased weakness and proprioceptive issues with my left arm and hand.  I think this may be the beginnings of Tysabri withdrawl or Tysabri Rebound Effect.  Either way, it’s no fun to have MS symptoms returning and worsening.  Thankfully, today my arm feels better, pain-wise, and is moving a little better as well. Hopefully it will stay that way. I’ll be calling my neuro tomorrow to get set up for my next IV steroid.

I saw another doctor yesterday who wanted to help me with my depression/anxiety, as well as neuropathic pain.  So, I was given scripts for Cymbalta and Ambien.  The Ambien is hopefully just going to be a temporary thing to help me retrain my body to go to sleep at a more appropriate hour at night.  I need some good rest to try and give my body a fighting chance at trying to heal.

MS fatigue sucks!

Here’s how I’ve felt all day…

IMG_2408

I pretty much look normal (whatever normal really looks like hehe) to most people on the outside. But many don’t see my cute pink cane in my car (as my backup walking device), nor do they see the pain searing up and down my spastic legs, or the fatigue which forces me to stop every few minutes to rest and recharge before I do that next load of laundry (that reminds me I have one waiting from 2 hours ago, ugh!). They also don’t see the grab bars in my shower. They don’t see the pharmacy of medications I carry in my purse with which I cannot be without in order to function. They don’t see me getting hooked up to an IV once every month (this Wednesday is the next one – wow time goes fast) to get a powerful second-line MS drug because I failed all the first-line drugs. And as I write, I have the problem of insomnia at night because of the painful spasms. Oh woe is me… whatever…

But it could be worse. Hell, it’s actually been worse. I will be coming upon my 2 year mark of being relapse-free. Remission is awesome but I still suffer with the remnants of what this disease has done to my body. I am lucky to “look normal” – just wish I felt that way.