TW: blood and disease - Multiple Sclerosis
MS is a lifelong disease that has no cure. It causes your immune system to attack healthy cells rather than viruses etc. mainly your myelin. Myelin is the protective sheath over your nerves. Think of it as the plastic bit around the wires in an extension cord. Once the myelin is “eaten” the immune system attacks the nerves. This causes so many problems. It also will leave lesions (Latin for scars) all over your brain and spinal cord. Which also causes problems. For me I experience a lot of intense fatigue because I have massive scarring on the part of my brain responsible for wake and sleep cycles. Basically I have secondary narcolepsy from the scars caused by the MS. I also have a hard time with memory in some areas such as remembering faces and math. It’s super annoying. I also have hemoplegic migraines as a result of the scars. Which cause blindness and intense pain. I have experienced total paralysis on one half of my body on more than one occasion, sometimes lashing months. It’s horrible. 😣 I’ve also experienced my eyes going in different directions and sticking that way! When these major issues happen I have to have so much IV steroids for days until my symptoms improve. Hospital stays are normal for me. The treatments are vast, so many to choose from and I’ve tried them all. One is called Tysabri and it is a monthly IV infusion. It worked well! But it also can cause a deadly plain infection of which there is no cure or treatment. So I stopped that one. Now I take 7 hours chemo every 6 months along with steroids… turns out I’m allergic to it and go into anaphylaxis. Which means more drugs. To me it’s worth it though. I’d rather die than be paralyzed. I have 3 kids and 5 dogs that need me. I need to live my life.
I’m not posting this for sympathy, I detest sympathy. I just want people to know what MS and give those who have it a little grace because MS is not a disease you can see. We look perfectly fine. Even when we’re in a bad flare we look fine. So people forget how much we suffer and we can be dealing with absolute hell and you’d never know. I don’t even have disability, EBT, Medicaid, or a handicap plate. I’m trying to just be normal. 🤷🏻♀️
today I had my chemo and it was rough. I don’t feel okay at all. But I should be okay in a couple days. Thank you for reading! 🧡🧡
Multiple Sclerosis (MS) is a complex autoimmune disease that affects millions worldwide. It occurs when the immune system mistakenly attacks the protective sheath (myelin) covering nerve fibers, leading to communication issues between the brain and the rest of the body. Early symptoms can include vision problems, numbness, and fatigue, but as the disease progresses, individuals may face more severe challenges such as impaired mobility and cognitive issues. Research indicates that the progression of MS varies greatly among individuals, with some experiencing only mild symptoms and others facing more debilitating conditions. Current treatments aim to manage symptoms and slow disease progression, utilizing medications such as disease-modifying therapies, which help reduce the frequency and severity of relapses. However, these treatments can come with significant side effects, making it crucial for patients to work closely with healthcare providers to find the best path forward. Living with MS often carries a social stigma, as it can be difficult for others to recognize the struggles associated with this invisible illness. Awareness and education are vital in helping both patients and their families navigate the complexities of MS, ensuring that they receive the understanding and support they need. It is essential to foster communities that raise awareness about MS and promote advocacy for those affected. By sharing experiences and supporting one another, the MS community works towards a future with better treatment options and a greater understanding of the disease.
Sending you a great big hug from 1 MS Warrior to another. You are not alone in this. Because it can be an invisible disease for some of us, many just do not understand what we go through on a daily & sometimes hourly basis. I’ve learned to stay close to those who at least try to comprehend the struggle🧡🧡🧡