MS and Me

Hello Everyone,

I took a week off to rest as I was feeling sick and felt like I needed a mental break. I decided to take time and enjoy some great football. Spain is definitely going to be this years Euro winner. As for the Copa America I think who ever wins the Uruguay vs Colombia game will be champions of this tournament. But if I had to pick I think Colombia will win it all. I can say for certain is this has been one of the best euros i’ve seen in recent years. The future definitely looks bright for this Spanish team. I believe they are going to be a great side this upcoming World Cup. I hope I get tickets to at least go watch of their games. This week I wanted to talk about a little bit about MS and my experience with it. I want to raise some awareness as I hope to one day be cured from it.

Multiple Sclerosis (MS), is a neurological condition. MS happens when your immune system attacks your nerves by mistakes. It damages nerves in your brain and spinal cord. ‘Sclerosis’ means scarring and refers to the scars (also called lesions) that MS causes in your brain or spinal cord. These show up in MRI scans. It's ‘multiple’ sclerosis because the lesions happen in more than one place. MS is a life long condition but people don’t usually die from it. MS is the most common central nervous system condition that affects young adults. There is no cure for MS yet, but there are lots of way to manage your symptoms. For many people, there are also drugs that can help with some of the symptoms. MS is two and a half times more common in women then men. You don’t inherit MS, but family members do have a slightly higher risk of developing it. In the United States, roughly 300,000-400,000 American adults have MS. Vitamin D deficiency increases the risk and progression of MS. The cause of MS, like many other autoimmune diseases is not known. Medical researchers have yet to figure out exactly why the immune system mistakes healthy cells for dangerous ones and attacks them. Even though some triggers of MS have been identified, the reason MS develops and progresses is not well understood. It's quite common for MS to be misdiagnosed. Roughly 18% of MS cases are eventually classified as misdiagnoses. MS can be hard to diagnose because it has nonspecific symptoms that do not necessarily appear the same way in every person with the condition. For example, it's typical for MS patients to have discreet neurological symptoms that come on quickly, go away (resolve), then come back again months or years later. MS is unpredictable some people may be only mildly affected. Others may lose the ability to see clearly, write, speak, or walk. Early symptoms can include vision problems, trouble walking, and tingling feelings. MS affects people differently. But common problems are trouble with movement and thinking, and bowel and bladder incontinence. Other symptoms include muscle weakness, fatigue, tremors, dizziness, hearing loss, depression, and change in sexual function. About half of all people with MS have thinking (cognitive) problems linked to the disease. The effects of these problems may be mild. Talk to a provider if you have trouble focusing, trouble paying attention, memory loss, and poor judgement.

I was diagnosed in 2019 and it was a grueling process. I remember it very well. I remember when I was 15 I was having constant headaches and suffered from tingling in my body. During that time my mom was getting help so I could have heath insurance. She took me to my primary care doctor and after many test he suggested I get an MRI done to see what was going on in my brain. After I got the results my mom unfortunately lost that help and I was unable to continue seeing my doctor. In the original finding when I was 15 they observed a couple lesions which they believe to potentially be signs of MS. Unfortunately around that time my mom was struggling to keep up with bills so I had to sacrifice a lot. I was told when I was diagnosed if I would have continued the process and started my treatment then I would be more in control according to the doctor. I let it progress without even knowing I had it. Fast forward to 2018 I was having a lost of sensation in the left side of my body. At this time I did not have Kaiser and we were in the process of getting it. My wife and I were using another insurance at the time. This doctors told me I was having a problem with my heart and send me to the hospital. Once at the hospital they told me everything seem fine. They send me to a heart specialist and he said everything was ok. I was left back at square one and wasn’t really getting any answers. It was around this time when I completely lost the feeling on my left arm and doctors started to think that I was having a stroke. This was all towards the end of 2018 and in January of 2019 my coverage with Kaiser started. I immediately picked a primary care doctor and met with him right away. Little did I know how much Kaiser would help me. They started running test and immediately ordered an MRI. My lesions appeared again but this time they immediately scheduled an appointment with the neurology department for me. There was so much going on around this time I remember it very well. My neurologist immediately started some test and then he scheduled a spinal tap. This was an experience, they inserted a big needle into my spine and extracted some liquid from there. This test is done to make a firm diagnosis.

I remember that call very well I had just left work for the day and was driving back home with my son in the car. The neurologist called me and said “hey we have your test results and i’m sorry to say you have multiple sclerosis”. He reassured me everything was going to be alright and that there are medicines to combat this autoimmune disorder. He started me with a daily injection that I was to do at home and he told me that I could get a nurse to show me how to do it on my own. At that moment I kept my cool I drove home and once home I remember sitting in the couch and just breaking down. At that moment I felt like all my hopes and dreams had just disappeared and I felt defeated. At that time I had a coworker who was studying to be a nurse and agreed to help me with my daily injections. I am so thankful for having her at that time as it was so difficult to get injected everyday. I started having horrible side effects however. I let my neurologist know what was going on and they agreed to switch my medicine to another injection that was to be taken every other day. It did not take long however for me to start having a reaction to this medication as well. I was also feeling so sore as well from all the injections it was beginning to hurt quite a bit. It was then when a semi annual infusion was suggested and after this other medication I was willing to try anything that didn’t involve me injecting myself. I started rituximab and that’s the medication I been taking the past few years. It seems like not that long ago that I began this journey and Ive come a long way. I am now able to have some relief from my symptoms. I’ve had a few hiccups it hasn’t been perfect but now I have a positive outlook in my future. I suffer a lot from fatigue and phantom pains that come and go but this medication definitely helps quite a bit. I am very thankful for the doctors that are on my team always ready and willing to help me out when ever I need it. My treatment goes so smoothly because of the wonderful oncology department nurses who do everything in there power to make me feel comfortable.

I hope you have learn something about MS and if you want to help and donate for a good cause go to https://www.nationalmssociety.org. There you can find information about MS and if you or a love one have MS you can find support groups or general information about this autoimmune disease. I appreciate everyone for taking the time to read this weeks blog. I will be gone this weekend as I will be going camping but next week I have a story about a crazy adventure I had this week which allowed me to get a stunning capture. Until next week take care!