Feeling worse after third Tisabry infusion
Hello! F23, in May, I was diagnosed with multiple sclerosis, which first manifested in December after I had the flu, with numbness in my fingers, and then in April with blurred vision in one eye. At the end of June, I started a course of 5 methylprednisolone IV infusions to treat the initial onset (debut) of the disease. Then, in mid-August (after 2 months), I started Natalizumab (Tysabri) right away, a second-line therapy, since my MRI showed many lesions, and I was diagnosed with a rapidly progressing form
This past Tuesday (October 7th), I had my third infusion after a 4-week interval. However, last Saturday (October 4th), I played air hockey and afterwards felt like I had pulled a muscle in my shoulder. It turned out I hadn't, and since then I have felt all the symptoms of my old relapse: very intense brain fog, pain in my shoulders, neck, lower back, and legs, some blurred vision and numbness in my fingers have returned
I can't understand if this is my new reality now that the methylprednisolone has worn off—will it always be like this now? Or does this seem more like a new relapse, since it has been lasting for more than 48 hours (it's already been a week)? I'm scared that Natalizumab didn't protect me from a new relapse. Maybe it started flaring up when the methylprednisolone stopped being effective (after 3 months?), but the Natalizumab hadn't had time to start working yet (doesn't it take about 3 months to build up?)
I have made an appointment with my doctor for a consultation due to suspicion of a relapse, but the prospect of going through methylprednisolone therapy again seems daunting. I'm trying to figure out what is happening to me and I don't understand it yet. Has anyone else experienced this? I feel very anxious, the brain fog and my general condition are depressingly anxiety-inducing, so I would be grateful for opinions from experienced people. What do you guys think?
This is all part of learning to live with MS. Believe me, we all go through this particular process again and again. "Oh ×÷$^: jji7!! Now what? Is this a flare? Do I need to do the steroid thing AGAIN? Is my DMT doing ANYTHING?"
You are doing exactly the right things. You called your neurologist. You came to this forum. You are an exemplary MSnik. Our default state is "What the hell!??"
Maybe after a bunch more years with this schmuck of a disease you will learn to roll with the punches, but for right now, you're doing the right thing.
Has anyone else experienced this, you ask. Oh @terenve, we ALL have, in our own way, in our own time. Im sorry you feel disoriented and dubious. Give yourself all the time you need to learn who you are with this damnable disease. You're finding your normal. It takes a while. But your actions show your instincts are FLAWLESS. Your reaction is immaculate. You’ll find your way. In the meantime, here's a remote hug. [>[>[[>terenve<]]<]<] . We got you. You're one of US. Which is a bitch, but you are so not ALONE.
