MULTIPLE SCLEROSIS
This week I want to talk about MS and what MS is and how it’s affected me and my family up to this point. I was diagnosed with MS in 2019. However, I had suspicions that something was wrong since I was 15 years old. Back when I was 15 I kept having headaches to a point where I couldn’t bare to look at the light. At first, doctors thought it was a severe case of migraine headaches. They gave me medications for it but it wouldn’t help. Doctors finally decided to do an MRI. Back then my mom was in charge of checking test results and she did not know much English so she relied a lot on me to translate for her. Once I got my test results they noticed I had white lesions in my brain and the MRI tech suggested I get further testing because he believed it was multiple sclerosis.
Test were not done mostly because the doctor at the time did not get to see me again because we lost our insurance with Kaiser Permanente. Years past and I would suffer with a lot of pain in my body not knowing what exactly was going on with my body. Back in 2018 I started losing the feeling on the left side of my body. I complete lost the feeling on my left arm. I got very worried specially because I was being told that losing the feeling on the left arm is a sign of a heart attack. I went to the doctor obviously not thinking that is what was wrong but I can’t lie I had that in the back of my mind. I did not have insurance at the time so I went to a doctor that was working with non insured patients. He did some testing and he immediately said I need to go to the ER as my ECG showed that I had an inferior MI. Again, like I said in a previous blog I had no idea what that meant. That same day I went to the emergency room, after doing some testing they said everything was fine. They did however send me to a heart specialist.
I lost my brother to a heart problem back when he was about to turn 1 so I was wondering if this is just something that is inherited through the family. The heart specialist reassured me that everything was working fine and that I had nothing to worry about. However, I was back to square one and I was even more worried now because I stated losing the feeling on my left leg. My wife decided to apply to Kaiser Permanente thankfully her job started offering it around that time as well. I decided to go to urgent care and luckily Kaiser’s wonderful staff were determined to figure out what was going on. After doing another MRI the lesions appeared again. Compared to when I was 15 I had many more lesions. I was referred immediately to a neurologist and the test started. I had my appointment with him and after a spinal tap exam my diagnoses was confirmed.
I remember I was driving home from work. I received the call from my neurologist and he told me that I had multiple sclerosis. Maybe it was because I was driving I didn’t know how to react but as soon as I got home I changed I went to sit on the couch to eat dinner with my family. All I remember is getting an overwhelming feeling that all my hopes and dreams were gone and I could not get it back. Those first days were rough I was very depressed and uncertain of what was coming. So many questions and so little answers made me very anxious. My doctors have been great they have been there since day one and always keep contact with me. Especially, when I first started my first 2 medications which were not good on my body I was very vocal about what I was feeling and they always try to accommodate to try to make me feel comfortable and sure of the treatment they were offering me. I finally landed on a medication called Rituximab. Every 6 month now I get an infusion through the vein.
I want to share this story this week not only to share my story but to also encourage anyone struggling with an illness or with a condition to keep going. It does not get easier but if you let it take hold of you it does consume you. In my last 2 post I believe I have shared that I haven’t been feeling really well. Since September that I had COVID my symptoms have been really bad and impeding on my day to day life. It could be because my infusion is coming up but I can’t be so sure. Last year around this time I lost the feeling on my hands and face. This year is a bit more aggressive is affecting how I am feeling at work and the days I am going on hikes to take pictures. I love photography though and I can guarantee that no matter how I am feeling I will find a way to make it work.
This picture I am sharing this week was rough to get. I have shared pictures of this park before but I had to go back to capture a better picture of this waterfall. Lately because of how I been feeling I been taking my sister with me just in case anything were to happen she is with me. I thank her for accompanying me and helping me with my gear. Unfortunately, she had a little accident while doing this trail but she is doing ok. She is a trooper and I thank her for always putting up with me. If you want to see a little more of the scenery I took a small video and uploaded it to my tik tok. If you want to learn more about MS visit nationalmssociety.org. Thanks again, for all the support!
