September 16, 2021 - Prednisone 50 Pills Per Day, 20MG for 3 Days , Update

    Today is the last day of oral steroids. I think they are helping because it doesn't seem like my symptoms have gotten worse however my left leg is weak, my left arm is recovering, my right side is recovering and movement or change in position is exhausting. I just keep hoping I will wake up and have all functions back but that is unfortunately not how this disease works. 

    Do you know how older people say they need to stop and rest? I now know exactly how that feels and it sucks! In my mind, everything seems normal but when it comes to the task itself my body refuses to accept the messages sent by my brain. My left leg refuses to move and it takes time for it to finally receive the message. 

    I like the steroids because I feel like they help so much except for some side effects. Heart racing, shortness of breath, darker facial hair, and brain fog/confusion are just to name a few. They're not so bad but do catch you off guard. I won't complain though. Whatever can get me from one moment to the next. I am blessed to not have my serious adverse reactions.

   I can't lie. All of this has been so difficult. Not just for me but my family. My husband wakes up throughout the night to help me to the bathroom. I could use a walker but I am so unbalanced that I could fall while using it. My husband provides more support because he hangs on to me. I am very lucky to have him. I usually have to use the restroom about 5-8 times a night. The steroids act as a diuretic and make you so thirsty. I feel bad for waking him up but I don't have any other choice. I even need help getting back in bed and getting on the toilet. Also, it's so hard to watch him do everything. I want to help. I want to clean. I want to organize. I want my independence but I physically can't. It's a blow of disappointment every time I think of it. It hurts. It's hard. I am stuck and have to be patient.

    His mom wants to help but I'm bigger and I worry she won't be able to handle my weight. I am told whatever I do, DON'T fall because if I break something it will take forever to heal and it will be absolutely miserable. The last thing I want to do is cause her or myself unnecessary injury.

    Its also been very difficult on my pets. They are used to constant affection and it's just too hard to give that to them at the moment. I'm moody and unbalanced and worry about hurting them unintentionally since they are 10lb dogs that like to run under your feet.

   

 I called my neurologist to provide an update today. I said symptoms have remained consistent but my balance is worse. They will call me back and I will update you. I am hopeful the steroids did their job and stopped the flair from progressing. Fingers crossed because the pills dissolve fast and taste horrible.

    Well, my Neurologist wants me to take the steroids for 2 more days which sucks but if it helps, I won't question it. He said he wants me to do another MRI and that I do not need to taper off the steroids. He is also working on getting the infusions set up and says the MS infusion medication should take effect immediately which is so comforting. The Tecfidera and the Vulmerity take up to 6 months or longer to get in your system to take effect and at the rate that I am relapsing, that won't work. not to mention you have to wait another 6 months to make you have no new lesions. 

    I am just ready to recover. It took me 2 hours to type this all up but practice makes perfect and I'll need to type when I return to work. Last year's relapse (6/2020) is nothing compared to this!

    Below is a list of medications for MS, potential risks, statistics, common side effects, etc. The worst thing to watch out for is PML. It is a serious, fast-acting, deadly brain infection. If you get it the statistics from living or dying is 50/50 and is largely influenced by how quickly it is caught.

Rituximab aka Rituxan is similar to Ocrevus and is a B-Cell Therapy for Multiple Sclerosis. Hopefully, I will be starting this infusion soon.