I haven’t updated in a while so i thought I’d take the time to do that. I have run out of my savings. I started having new symptoms in February, quit my job because of my fatigue, etc., and have been living off of my savings since then. In March, when my insurance was back on, I was finally able to have an MRI, which showed a new lesion on my spine.
I experienced pain all over, vibrating all of the time, all over. My legs, stomach, back, all over. It even felt like my organs were jumping around inside. I had this unique sensation, it literally felt like I had a wad of bounty paper towels stuck in the crease of my ass (sorry if TMI, don’t know how else to explain the feeling). My hands were rigid/tight, I couldn’t hold a pen and write with it. I couldn’t even stand for longer than a few minutes without my legs shaking/trembling. I needed to sit/lie down. I was still capable of walking a bit, but I would start to experience pain shortly after. I would feel burned out just walking to the store for food, which I had to do. Several things were wrong, even stuff I’ve left out.
I had to take steroids to treat it, which made me feel even worse. I felt AWFUL, on top of dealing with some things at home. It was hard. It really was. I ended up going back to the neurologist in late August, I think... or early September. She ordered another MRI to check on the status of that spinal lesion. Last week, on Friday, I was given the results. I have yet another, NEW lesion, and I’m back on steroids. I hate the way steroids make me feel, plus it causes acne on my face, chest, back, and arms. I really don’t want to have to go through this again, but it’s the treatment available. They want to switch my meds to infusions every 6 months. They also said that the other NEW lesion that developed back in February hasn’t healed.
My spasms are in more places than they were before. I have more spasms in my upper back, where I also have more pain. The pain is in my shoulders, my back, and neck. Spasms in the upper part of my arms, and upper back, as well as the usual places they’ve been prior. As well other issues. It is frustrating. I really try not to dwell on it. I try. I don’t deserve this. I really, truly don’t. NO ONE DOES!
I have been trying to find a job. I am completely out of savings. I reached out to a disability lawyer to see if I even qualify, WHICH I DEFINITELY FEEL LIKE I DO. I have been holding out on that, but with this new update, I have to see what options I have. There is no way they can expect people with MS, and active lesions to maintain a full-time job. I can’t. Not with the added lesion, pain, fatigue, and my chronic depression that absolutely contributes me not being able to currently maintain a full-time job. The only people who know I have chronic depression are my health care providers.
I called the lawyer kind of late, so maybe they’ll call me back tomorrow, or I’ll reach out to another lawyer. I just really dread the next few days that I have to be on steroids (Dexamethasone) because it made the pain worse when I was on it a few months ago. I have already been having breakouts that make me feel extra unattractive, so that just adds on to it more. I’m in more pain now, on my first day of it. I was supposed to start yesterday, but I accidentally mixed up the prescriptions, and ended up taking 400 mg (4 pills) of Amantadine, like an idiot. I ended up calling the hospital to make sure I didn’t have to go to the ER... I woke up with a new, random pain in my side. I don’t know why, exactly. My upper thigh region (above my knee) feels a little tight/painful at the moment as well.
Hopefully some good luck comes to me. I really need it. Just to lift my spirits. I will update more, when I can. I just wanted to let it out.
