My Next Chapter

I was diagnosed with MS in December 2006 and started Avonex immediately. I was terrified of needles then. I'm now 44 years old and have been through several medications. I'm currently on Zeposia.

I felt a flare coming on in WalMart

Last year, I was on Ocrevus and taking care of my Dad after his heart surgery. He wasn't allowed to drive for a month because of the anesthesia he was on, it made him dizzy afterward. He wanted to get a soda from Walmart. He got in a scooter and went to the pop aisle while I decided to look for clothes sales for my grandkids. The first thing I noticed was my left big toe went instantly numb, then all my toes, then the bottom of my foot, and my ankle. I knew I needed to get out of there. I found my Dad and we went directly to the checkout. I knew I needed to get him home and have someone drive me to the hospital. By the time we were checked out, he had me in the scooter and he was walking next to me. My left leg from the buttocks down was so intensely numb it started hurting, badly! That's when I started feeling burning, like boiling water in my veins on the top of my foot. I've never experienced pain like that in my life and I have two tattoos and two natural births, one breech, to tell you that I know what pain is.

I was in more pain after my ER visit than before

At the ER, my BP was the highest it's ever been - 207/117! I thought I was going to have a stroke or possibly not make it home again. They did some tests, X-rays, and an ultrasound and diagnosed me with sciatica pain. I have had back problems for years so it made sense to me. They gave me some shots and sent me home with muscle relaxers and pain pills. Unfortunately, that's the beginning of my painful story. I was in such terrible pain I couldn't walk, or even sleep. I actually cried several times and I haven't done that since I was a small child. I went back to the hospital several times and had several appointments with my family Dr and neurologist. I was offered more pills that didn't do anything. I kept telling them it wasn't making a dent in the pain. I was so desperate for relief I told my Dr that if she couldn't help me that I was going to have to do something, and I didn't know what that was yet. I was thinking about hurting myself or getting street drugs. I honestly didn't know, and that was terrifying to me. I was actually thinking about ending it if this was my new life. I wanted steroids! Nobody was listening to me, just giving me stupid Motrin. I thought I was having an MS flare but my neurologist said I wasn't. I wasn't able to walk for 4 months.

It took several MRIs to find an answer...or did I?

After several MRIs, I was diagnosed with a herniated disc that was pushing on my S1 nerve. Okay, I got an answer finally! I got started in PT and was finally given a short round of steroids. I got immediate relief from the steroids. The physical therapy helped in general but not with my back or leg. I was still in terrible pain. I decided it was definitely time to get disability benefits since I wasn't sure if I'd ever walk again. My neurologist is still saying it has nothing to do with my MS. I don't know what I believe. I still have pain in my leg and back now but I am able to walk. My pain is my reminder that this isn't over. I currently have gotten several injections in my spine with bad outcomes. If this last one doesn't work, which I already know isn't, by the time I go back in two weeks I will be getting a referral for surgery. I'm going to continue to fight. I don't have much of a choice. I share my story here hoping someone else has been through something similar since I don't feel like my Drs are getting the answers for me. If my issues aren't MS-related, I would be surprised because of the way it started from my toe, then piece by piece it went up. I thought nerve damage started up and went down. Also, before this happened I was in the ER with walking pneumonia and bronchitis. I've never been sick like that before and because of it, I decided to stop taking Ocrevus because it was so strong and my immune system couldn't handle it. I think I might have had a herniated disc from coughing my rear end off and it caused a flare... Just my thoughts. I still haven't been approved for disability, and my leg still hurts badly. I'm just hoping to get onto the next chapter.

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