My previous entry was a fictional account of my last visit to my neurologist. I guess now its time to keep things real. My name is Erick and I have MS. More importantly, MS does not have me. If you are not familiar with MS (Multiple Sclerosis), it is a chronic autoimmune disease that attacks the central nervous system (CNS) — the brain, spinal cord, and nerve fibers to the eyes. Don’t feel bad if you didn’t know that. Sometimes, I’m not sure if my family truly understands. Some of the common symtoms are:
- Vision problems – this was my first symptom, though at the time I had no idea what it was.
- Numbness, tingling, and abnormal sensations of the face, body, or extremities (arms and legs) is one of the most common symptoms of MS.
- Pain – thankfully I deal witha minimum amount of pain
- Muscle weakness and uncontrollable shaking – I do notice fluctuations in my strength and spacity in my hands.
- Dizziness - I sometimes feel off-balance and I’ve dealt with vertigo (the sensation of spinning, or of things around me spinning) in the past.
- Fatigue – This is the big one for me. Sometimes it takes everything I have just to get out of bed in the morning.
- Depression – I hate to admit it, but this is also I tremendous problem for me. I’m facing it and getting help for it.
Why did I list all of these symtoms? What do they have in common? You can’t see them. The normal person on the street would look at me as perfectly healthy. (Ok, they would probably think I need to lose a few pounds, but who doesn’t?) I’m currently taking the oral medicine, Gilenya. With so much going on my my life, I felt like this was the best course of action for me. The Rebif shots were painful and I had to rotate the injection sites each time. That led to me forgetting when and where I took my last injection. It also made travel extremely difficult. With my medicine, Gilenya, the side effects are:
- Back pain
- Abnormal liver tests
- It can cause your heart rate to slow down, especially after you take your first dose. You will have a test to check the electrical activity of your heart (ECG*) before you take your first dose in a medical facility where you will be watched for at least 6 hours.
Since my initial diagnosis in 2009, I haven’t been as diligent as I should have been in progress. Though no new lesions have developed since in 2009, I want to take this year to get ahead of this disease and not let it cripple my mind, body or spirt. To document my progress, I will use The MS Workbook: Living Fully With Multiple Sclerosis. I’ll use this guide to show how I manage depression, fatigue and weakness, cope with pain, get the most out of my health care system and to combat anxiety. Also, be sure to check out the National MS Society website for breaking news and developments.
My goal is uplift anyone out there who is dealing with the disease and maybe give some insight to their caregivers and friends.