A Break from MS Meds

MY BRAIN W/LESIONS - Pretty big, huh?

It has been one month since I've stopped taking my MS injections. I still have the ever-fantastic leopard spots from shot scars past. I had heard these injection site spots stick around for a while, but I had hoped that wouldn't be the case with mine. I was wrong.

When I first started these shots I felt like I was doing the right thing. I didn't know anything about MS meds and yet, my doc had me pick the one I wanted to 'try'. I simply picked the one that seemed like it would work for me. When the nurse from the drug company came to my house to train me to inject myself, I was hopeful that these little shots would be my salvation. My escape from MS. The entire time I was taking the shots I started feeling even worse. I thought my MS was progressing and I was in for a hell of a ride.

I called my drug company's nurses line a few times asking them all sorts of questions. Making sure the reactions I was going through were normal. According to them, it was all going as it should. Of course, they reminded me that the shots only have around a 20% chance of reducing an MS exacerbation (I've learned to dislike the word relapse, it just doesn't make sense to be used with MS). At the time, I remember wondering why I was doing all of this. Why was I subjecting myself to this pain and frustration for a such a small chance at salvation? I know why. Hope. I was hoping those shots would save me. I wanted my husband and sons to have me at my best for as long as possible. Just that slim shot at hope was enough for me. Until I began to feel worse and my doctor wouldn't listen.

I told my doctor that I wanted to switch. He said I could try one of the new pills, but I needed documentation that my shots were having an adverse reaction with my body. Um, let's see...I feel like hell and have these symptoms that weren't there before. I think that's about as adverse as it gets.

JUNE 2013 - Steroid Infusion

I felt sick every single day. I had constant pains, no energy, and the shots were beginning to hurt more and more with each poke. I finally decided I'd had enough. This is MY MS and I was going to take charge. As I mentioned in a previous post, I fired my neurologist and I also stopped taking my MS injections all in the same week. It was like a huge weight being lifted off of my back. After a few weeks I began to feel like my old self. I have less pain and more energy. I still have the same MS symptoms as before, but nothing more has been added on.

I'm not planning on being off the meds forever, I just knew that I was not feeling like I should. So, I made the call to take charge of my care and my disease. I'm glad I did, because I feel better and that's all I wanted. I think having a disease, whatever it may be, it's important to be in charge and not succumb  to what we are told we must do. Doctors do have the right directions, but we are the ones walking the path. If we think a different path with the same outcome will be the right way, then it's important to listen to that little voice inside.

I don't know if I made the most insane decision ever or possibly the most beneficial one. I feel good though, and I think I'm heading in the right direction. I've changed my lifestyle immensely in the past few months and maybe that has something to do with it as well. I don't think I'll never know. I don't think any of us MSer's will ever know if we are doing the right thing. I just know I can't wait for the day when the headlines read 'MS Cure Discovered'.

Until then, I am going to maintain hope.

Have you ever felt like your MS was getting worse or was not benefiting from the meds you've been prescribed? What did you do?

I'm closing this post out with a picture of my puggy, Vader. I like to torture him with ties and dog clothes as much as possible. As you can see by his face, he's not amused. I thought I'd throw a pic of him here at the end, because Sunday is his 6th birthday. Happy birthday, to my puggy.



Thanks for reading.

Take care.

NB