MS Fighting is MY Passion

The MS Walk this year has been a huge success. This was our fourth year walking and I think it was one of the best. The weather was amazing, not too hot, and no mud puddles. Our team raised exactly $7,000, there was only one team that raised a little more than us. The National MS Society is still taking donations until late April, so it's not official but I still think it's pretty amazing. Over the last four years we have raised over $20,000! Last year we also raised $7,000. 

I appreciate everyone who has supported me in anyway since I've been diagnosed. When I was first diagnosed I only disclosed the information to some really close friends (I still remember e-mail one of my best friends because I knew I couldn't call her without breaking out in tears, and I knew she'd ask how the MRI went.) Over the years I've become more open, it's also become easier and a HUGE part of that is because I've gotten nothing but support. I don't think I can ever thank those who've donated money to our team, played in our annual golf tournament, and my special friends who even though I can't always keep plans we make have still stayed by my side. 

Now we're in April and it is going to be a busy month. For the first time I will be attending the Louisiana Public Policy Conference with others from the National MS Society as an MS advocate. I've already sent e-mails to my senator and representative asking if they would meet with us so I can share my story and how MS has affected my life. I'm nervous as hell, but my sister will be with me along with some amazing other people who either have MS or have been affected by it in some way. 

Then, the Monday after Easter I'll be getting facet injections. I've been debating if I want to have them done since the last procedure I had (the spinal cord stimulator) ended horribly. I had that procedure on a Thursday, then it was taken out on Tuesday morning, but Monday afternoon I started getting lower back pain. I was so ready to get it out Tuesday and by that night the pain had gotten worse. By Wednesday I had developed a headache and by Friday I was unable to lie on my back, sit up, or even get out of bed by myself. I really hate going to the ER, but it was to the point that my mom wasn't giving me a choice. I ended up having blood in the epidural space and the doctors were concerned I'd develop an infection so I was transferred from Ochsner Kenner's ER to the main campus. I spent a day in the neuro ICU and then transferred to a different room for five days. 

After that I've been really worried about having any injections, but after talking to the PA, the pain doctor, and my pcp I feel like I have to try it. Plus, this time there won't be anything left in my back (the stimulator placed leads in my back). So, I'll be going to an outpatient surgical center and my pain doctor will inject steroids (maybe other medicine too, not 100% sure what exactly it will consist of) into the joint. It's similar to an epidural but instead of the medicine being put around the nerves it'll be it the joints between the vertebrae, he'll probably do it on a few different joints. I'm praying this helps because if it does then he can do a procedure to make it last long. Also it may be able to take the place of my Botox.

 While the Botox helps and I've had done every three months for about 2.5-3 years. But, since my neurologist has done the Botox (instead of the pain doctor) she connects the syringe to wires that make various noises depending on the muscles. The first few times she could tell my muscles were very tight and in February when I had them done we could hear my muscles spasm. This at least answers the question that the pain is coming from my muscles, not the nerves and is a big reason medicines that help with nerve pain weren't very effective. If the muscles are tight or spasming due to inflamed joints in my spine the injections should work. Right now they aren't sure exactly why the muscles are spasming. 

I do have muscle spasms often in other places, so it may just be due to MS or could be a combination. I'll just hope and pray these injections work because the more procedures I try that fail the less hope I have. Sometimes the little glimmer of hope is the only thing that keeps things going, especially when I'm in a lot of pain. BUT, the National MS Society is continually doing research on pain and MS. In their latest magazine (they publish quarterly magazines) they are doing different research with MS and pain. They actually posted an article that they are injecting a certain protein in the backs of mice with MS and it seems semi-promising. It is still at the very beginning stage, but it's hope that maybe one day it'll be something to help me and others suffering from pain with MS.