Updates, you do not want!

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bad newsGood afternoon y’all! I hope you are having a good day. I did not do any posts yesterday because I was processing the update I did finally receive from my Neurologist. Although I did not expect good news, I do not think I was prepared for what I heard. 

Thankfully, my husband did come to my appointment with me to the Neurologist yesterday.  The doctor went over my MRI results, from Saturday’s MRI. There was not any good news during this appointment. The doctor explained, that there is a tremendous amount of new and active activity on my brain and a large lesion on my spinal cord. She actually told us, that my MRI was one of the worse she has ever seen. Talk about making a patient feel better in any way, this was not a good way to do it! She then carried on about how the Tecfidera, that I decided to changed to about a month and a negativehalf ago, was not strong enough to control my disease. She went on to explain things she thought I need to switch to. One of which is completely out of the question, considering it was just released and I am not comfortable with this. I made the decision to go back on Gilenya. Moving forward, she has ordered an incredibly high dose of steroids, to get my inflammation under control and adjusted some of the other medications I was prescribed. She has also written me out of work for the next week, so that I can get plenty of rest and  heal. I still do not understand fully how I can have this much activity, in such a short amount of time and she could not explain any of it.

As I said, I did expect to hear that the MS was active, but I did not think it had gotten that bad. Of course, I am scared about what the future holds now and honestly, it is so hard to be positive right now. Even though I do know steroids help the healing, I really hate how awful they make me feel. Steroids make me anxious, nauseous and really moody. Luckily, I am out of work so I do not have to be in contact with people, which is probably the best idea the doctor had. 

Now, do not get me wrong, I am glad I have answers, I just wish there was better news somewhere in the mix. I will continue to keep you posted as to what is going on and when I am feeling better. I am hoping the healing process will be a quick one. If you have any comments, please feel free to leave them and I will respond as quickly as I can. There is a chance that I will do another post later with explanations on healing from a flare up, but it depends on how I am feeling. I hope you have a good day!!

Love 2

 

Always, Alyssa

33 thoughts on “Updates, you do not want!”

  1. I’m going through a very similar thing, though I haven’t had my MS as long as you, only about two years. Don’t know what to say except your positive posts always make me feel better, and I’m sending you all the good will I can muster. Constantly staying positive is not always possible, but I admire you for just posting. Stay strong and take care of yourself! Best wishes!

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    • Thank you so much! Your comment just made my day, and that was hard to do with how bad I am feeling. I am so happy to hear that my posts help you. It has always been my goal to help people! I am sorry that you are having a hard time. This disease really does do what it wants to. It takes a tole a tole on us. Please know if you need anything and need to vent, I am here for you!
      Thank you so much for your sweet comment, it really meant so much to me. ♡Alyssa

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    • Thank you so much for how amazingly sweet you are! I am truly thankful for people like you and glad that I have had the chance to meet (well online) someone as special as you!

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  6. Dear Alyssa, Although this news wasn’t happy, it is still news. So now you have a week to heal and get a new regiment of medications started. I hope that all the changes help to slow down the progression of the MS. I have been on huge amounts of steroids, and you are so right about the way they make you feel. It is a roller coaster of symptoms and emotions. I found music to be a haven from my moods. When I would feel out of control, I would lay on the bed with headphones on and block out the world. I would only concentrate on the music. Before I knew it, the coaster had come to stop, and I felt like myself again. My sweetheart just knew to give me this break alone. Maybe it would work for you also? Gina

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    • Thank you so much! I believe you are right about everything you said! I can completely zone out to music. I really appreciate your sweet comment! Take care of yourself!!!

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  9. Alyssa I was so sorry to hear you got upsetting news, no wonder you had been in so much pain. It must show you how strong you are to have withstood such pain! I’m sure many others may have ended up being admitted to hospital. I will be thinking of you. X

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    • Thank you so much for your supportive and encouraging comment, it really was the only thing that has made me smile today! I promise, I am trying to remain strong as I will never surrender to my disease. I hold onto the belief that I am stronger than the MS! Take care sweetie!

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  10. I wish I knew something to say that would make you feel better. I have no clue how to “understand” what you are going through. I appreciate you sharing your journey to the extent I make sure I read every post. I don’t know if any of this helps…. I just felt obligated to let you know there are people listening and finding inspiration in what you share.

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    • Thank you so much! Your comments do help me. I am doing my best to help others as much as possible and try to educate people as much as I can. The fact that you said people are listening and finding inspiration makes me so happy!!!! I really appreciate you taking the time to read and comment, I know you are a busy man!

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  11. Alyssa, I am so very sorry you received bad news. You will be in my thoughts and prayers. You seem like an incredibly strong person and I know you have the strength to fight back. I hope you take time for yourself and spend time doing something you love or with someone you love while you process the news. Take care of you!

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    • Thank you so much! I am really trying to be strong, it just is getting hard sometimes. But, I did promise myself 16 years ago that MS would not defeat me and stand by that! I really appreciate your amazingly kind comment! I hope you are doing well and please take care of yourself as well!!! I hope you have a good evening!

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    • So far they have been terrible! I am irritable, forgetful and I have no appetite at all. But, I will make it through and I am sure these horrible little things will help the pain!! Thank you for you sweet comment!

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