Category Archives: Medications

Avonex, Disability, Gilenya, Medications, Pre-HSCT

Don’t get sick and avoid stress!

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Those are the two things my neurologist said I must do to try and stop this downward spiral that started in December 2009.

Kinda difficult when you work full-time as an inpatient physical therapist, around ill people most of the day, and you have two young children in 1st grade and daycare that bring home every bug known to man.

Right now I am sick. Like, I have a cold, sick. Feel like a truck ran over me, sick. This stresses me out because I always have an MS flair when I get sick. And there’s my one-two punch. Sickness, one; stress, two. Thus, it’s no wonder that it’s tough to type this post as my left arm isn’t playing nice and my right eye is blurring out my computer screen. I am also limping my way around my house trying to deny the fact that I should just sit my ass down. Just fabulous! *insert oozing sarcasm* One ironically good thing is that I’ve been off work since yesterday because it’s my 7 year wedding anniversary tomorrow. I was supposed to have these few days off to celebrate. Yay, happy anniversary to me… *again with the sarcasm* …my husband will be so thrilled when I give him his present of a hospital-grade cold. So anyway, I have until next Wednesday to feel better before I must return to work.

But more importantly, I am awaiting a couple of things, which is why it is imperative for me to get better and avoid going on steroids for an MS flair:
1. I have an MRI scheduled for Sept. 26th – won’t be able to have it if I have a flair and end up on steroids.
2. I am supposed to start the oral medication Gilenya on Oct. 3rd – won’t be able to do that either if I have to go on steroids.

So, this is where we hope and cross our fingers that I do NOT have an MS flair from being sick, so that everything can go as planned. I really need to start this medication – my optic neuritis (meaning the blurring in my eyes) and old symptoms flair up too often for me to not be on medications. I am still doing better than I was before my CCSVI procedure, but I need to do more as I believe this disease that I have is multifactorial in nature – partially vascular and partially immune system related.

I really need to de-stress. I really need to get well. I really need to get my life back.

Alternative Treatments, CCSVI, Disability, Medications, Optic Neuritis, Pain, Relapse, Steroids, Symptoms

CCSVI did not stop my MS

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I am so bummed. My eyes were starting to bother me right before my second CCSVI procedure. I could tell that I was losing my eyesight (in both eyes!) and was hopeful that I would feel better after my procedure.

Day 3 IVSM for my MS vision issues

I can only half see – just enough to type slowly on the computer. I’m not sure if this is Optic neuritis in both eyes? Or if it is an occipital lobe lesion.

Today is day three of my IV Solumedrol. I’m starting to retain water which makes my eyes swell up and feel worse. Good grief. I think I may have go on MS meds again. 🙁

Disability, Fatigue, Optic Neuritis, Relapse, Steroids, Symptoms, Weakness

Hoping for a Vascular Tune-up

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Calling NY tomorrow to see about my possible need for a vascular tune-up. I am a ball of nerves – I hope I can sleep tonight!

I have had return of some of my symptoms which affect my eyes, my fatigue, and my leg strength.
Hoping to get those back in check following round two.

I just finished a 3 day 1000mg IV on Wed, Thurs, Friday. Now I am on an oral 60,40,20 taper for two weeks. I finally started feeling a bit better today.

I am in a wait and see kind of mode right now, since things have gotten slightly better since the steroids.
I’m still bummed out, but know that there’s always hope since a second CCSVI treatment may be a possibility later.