Since my last update I have had quite the adventure as I like to call it. I have spent a lot of time working on myself to become stronger and healthier to help fight this monster in my brain that I live with everyday. After trying the medications that I did, and having no luck with the terrible experiences, I decided to try a no medication treatment. I wanted to focus on becoming healthy and using a positive attitude to help change my lifestyle. I changed my diet and started working out as well as taking vitamins and minerals to help get me through the day. Sadly I had several episodes during this process including losing my ability to walk, having double and blurred vision, and pain throughout my body getting worse everyday. I still didn't want to give up trying so I continued to lose weight and fight my battle alone, which unfortunately wasn't good enough to keep the monster occupied. I received quite a reality check when I recently lost the vision in my right eye completely. It has taken weeks to get any vision back and still to this day has not fully recovered. Optic neuritis can play quite a role in this disease. We aren't sure if my sight will ever completely go back to normal, but that isn't going to keep me from fighting! I have decided that it is time for me to try another medication to help assist me in battling this nasty disease. I am currently in the researching process trying to decide which one is best for me. Unfortunately no matter which one I will decide to try will cost an arm and a leg to use. So friends I can only ask for your help, in this every day challenge that I go through, to come and join me in the 5k to help raise money for the expensive journey ahead of me. I love my support group with all of my heart and I owe them my life. Thank you for taking the time to not only read this, but for being a part of my journey.
I was SO looking forward to an MS medication that would NOT require injections. Happily there are a few new options that are in pill form. All of these medications have side effects. Some can damage your liver, others cause you to have a dangerous white blood cell count, or can effect your heart arrhythmia. After having a discussion or two with my Neurologist about what would be the best for me we decided I should try a new pill with less side effects than most others (at least less damaging). 40% of people experience moderate to severe flushing, 18% abdominal pain, 14% diarrhea, 12% vomiting, and the list continues. After reading these statistics I expected to experience flushing since such a high portion of people on the drug do. What I didn't anticipate or prepare myself for was the fact that I would experience all of these symptoms.
I began the drug at half the recommended daily dose and the plan was to taper up to full dose over a month. The flushing began immediately and was intense. My Neurologist told me to cut my dosage in half again - so I would technically be taking a fourth of what would eventually be my daily dose. I developed flu like symptons, nausea, upset stomach etc. It was January, so at first I didn't realize that I was experiencing stomach problems due to the medication. When I began throwing up and having severe stomach pains I decided to stop taking my pill. It seemed silly to me to be taking mediation that I would just throw up due to the flu bug I thought I had. My symptoms improved after a few days. I was feeling better so I took my medication before going to bed. The light came on and I had an ah ha moment the following day when my nausea and upset stomach came back with a vengeance. I could hardly make myself look at food - let alone eat. I tried to eat a few bites at meals, but it hurt so much and I was so nauseous. After a miserable day of fighting against the urge - I finally threw up the small amount of food I had eaten along with a small amount of blood. My mother and I decided that it was time to stop taking the Tecfidera and work to find another treatment that may help me. I was beyond disappointed! I had such high hopes that this would be my treatment answer! Since that time I've been focusing on my overall health and wellness. I'm working toward a more healthy lifestyle. Eating better, trying to exercise more. I should say that although Tecfidera wasn't right for me, it is working well for other people in their own personal battles treating MS. I hope that at some point in the near future I won't need to try again to find a medication that I can tolerate. I don't want to have another episode and have to go in to the hospital for a steroid treatment. I really would love not to be on medication at all. I have met people with my disease who can control their outbreaks almost completely by living healthy lifestyles maintaining good nutrition and exercise. I just need to regroup and try to get myself in a healthy place. That is my current focus and challenge.
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