2024 has not been easy. Shortly after the new year I started experiencing a new symptom. Dysesthesia. A nerve pain that, for me, feels like a rug burn. It comes and goes in random spots on my body. One day the back of my right thigh. The next, the side of my left arm from the tip of the pinky to my elbow. While extremely irritating and uncomfortable, I can live with it. What’s harder to live with is my fatigue and migraines. I get migraines almost every day. Sometimes it’s just auras-vision changes, ear ringing. Usually they come with a headache. They make it hard to get anything done. At least once a week they incapacitate me. I sit in bed, because if I lay it hurts more, try to breathe, and contemplate how I am supposed to keep doing this. I am tired. I don’t want to be strong. I don’t want to have to “push through” everyday. I just want a break.
It feels physically impossible to do it all. Wake up, get ready, work a full day, make dinner, go to sleep. Wake up, feel the tightness in my legs as I try to get up and move, get ready, work 4 hours then get a migraine, try to push through, go home and pass out, eat whatever is easiest, go to sleep.
The doctors and research all say the same thing. A healthy diet and frequent exercise is the key to managing MS and inflammation. Where is the time for that? I’m barely functioning at a minimum… how do I fit in a workout and time to cook a well balanced meal?
The past few months I have been dealing with the following: increased migraines, new skin sensations, tightness in my legs causing low back pain, chronic pain in my neck from a random injury last February, frequent urination and pelvic floor pain. Dealing with the medical system has never been more difficult. “Urgent” appointments are weeks away, regular issue appointments have at least a 6 month wait.
After an hour and a half physical last Monday, my PCP put urgent referrals into multiple specialists. My neurologist was out of the country and unable to see me until April, so I went and saw a new MS specialist on Friday. While incredibly overwhelming, it was reassuring to have someone confirm that my body is going through something right now. My symptoms are flaring and we need to get to the bottom of it.
At the end of the day, my symptoms are typical of MS. But typical doesn’t necessarily mean they aren’t anything to worry about. The good news is that this isnt a sign the disease is progressing, and does not suggest I will necessarily become “more disabled” in the future. Instead my MS is considered more active. While completely confusing, it’s comforting to know it’s not “all in my head” (except that it is cause it’s my brain lol). I now have nystagmus in my right eye (the eye with optic nerve damage from my first relapse). Nystagmus is an unusual eye movement, like involuntary shaking. I have hyperflexia, which is the body overreacting to reflexes, indicating spasticity in my muscles. My neurologist also thinks that my endometriosis might be triggering my MS to be more active.
So what now? Now, I go see a urogynecologist to see if I need another endo excision and a sleep specialist to rule out any sleep issues that could contribute to fatigue. Now, I try new meds. Baclofen for my spasticity. Emgality for my migraines. Provigil for fatigue. This is all on top of what I already take. I am literally a walking pharmacy. The MS specialist also suggested exercising 30 minutes every day. Im hoping that will be easier to do if these new meds work. He also pushed focusing on the GOMBS in my diet. Greens, onions, mushrooms, beans, and seeds. So I am a walking pharmacy and eating like a bird.
This year has been a lot. I truly feel like completely giving up. But I won’t. I’ll keep pushing. I’ll have hope that things will get better because I have so much to push through for. I remind myself that I am lucky. Things could be worse. I keep on fighting. Because what other choice do I have.