Today is the first day I’ve felt even slightly clear enough to put words together. My brain is still having a hard time connecting things, so forgive me if anything sounds a little off — I’m doing my best. To catch everyone up: on Tuesday they told me that Wednesday would be my last day of PLEX, then I would get a round of Rituximab (a medication similar to Ocrevus for MS). After that, they planned to check if my blood would clot on its own so they could pull my vascath and send me home that night. Well… that is not how things went. Instead, I ended up doing treatments all night Wednesday and into early Thursday morning. Around 2:10 a.m., I had to get a cryo treatment to help my blood clot. A couple of hours later, labs came back perfect, they pulled my vascath — and I was FINALLY free to go home. So I have been resting and cuddling my babies all weekend. But while I was there, we learned a lot. I was officially diagnosed with a very rare and aggressive form of MS called Tumefactive Multiple Sclerosis. These lesions mimic tumors, which is why it’s so difficult to diagnose. After having a second neurologist review my long EEG, they also confirmed that I’m now having seizures caused by TMS. My seizures don’t look like typical seizures — mine show up as numbness on one side of my body, headaches, tingling, zoning out, feeling like I’m floating in the ocean, etc. They can last anywhere from a few minutes to a couple hours. I’m supposed to keep a diary of them (which is SO hard, but I’m trying). I’ve started an anti-seizure medication, and we’re praying it helps. I asked my doctors if the seizures will only stop once the inflammation from the lesion goes down — and how we even get the inflammation to go down when I’ve already done every standard treatment multiple times. That’s where things get hard, because there really isn’t a clear answer. Everything they would normally do, we’ve already done. So right now we’re throwing everything we can at this and hoping something finally sticks. Continued in comments