Guest Blog for Newly Diagnosed!

MS WarriorI feel truly honored to be doing this guest blog for my dear sweet friend Grace. Grace is an absolutely phenomenal person and I am so thankful that I have had the chance to get to know her. Grace inspires me every day with how humble and strong she is! I know that she will disagree with me on this, but that just goes to show how modest she really is!

Are you a newly diagnosed MS Warrior? I say MS Warrior because all of us that have MS are so incredibly strong and fiercely tackle our illness! I was diagnosed with MS almost 18 years ago when I was just barely 19 years old. The events of this day are embedded into my mind forever. I remember being absolutely terrified because I had only known one person that had MS, my biological father’s wife, so NO relation at all and I guess it is clear that we are not close. She was of course a lot older than me, but she was in a wheelchair so I immediately thought that was going to be me. In my childlike mind I went from being diagnosed, to being wheelchair bound and then to death! But, now that I am older and wiser I know all those thoughts were NOTMS Warrior 2 true at all! Like I said, I have been living with this illness for 18 years and I am still walking and living life to the fullest!

My best advice to anyone that has been recently diagnosed or even those that have been living with MS for years is do your own research! Yes, you should trust your doctor, but you also know your body way better than anyone else. The doctors can recommend what they think is the best course of action with medication, but you are the one that has to take it, so you need to feel 110% comfortable with the choice because it is ultimately your choice, not theirs!

I can give you a rundown of what I have taken and what I have dealt with, but this is just my opinion and my experiences only. In the big picture I am not a medical professional, but am a professional in my own body! All those years ago when I was first diagnosed there were not options for oral medications only injection types. So, being young and naïve, I listened to my doctor and started on Rebif. Rebif is a 3 times a week sub cue injection. It honestly was not the injection part that was hard for me, it was the burning sensation I felt when the medicine entered my body. It felt like I was injecting myself with a stream of fire! Also the side effects from Rebif caused me to have flu-like symptoms the following day, which was no fun. I did what was recommended and pre-medicated, but being the stubborn person I am did not understand why I had to take one medicine in order to take another medicine that was supposed to help me. I started missing doses regularly because of how it was making me feel and the bruises I had from the injections and then just decided to tell my doctor it was not working out for me and fed3f7a42808627b5d83970c7ebe974c--multiple-sclerosis-awareness-curestopped it all together. I also ended up having more flare ups because I was not taking a disease modifying medication.

The next medication that was recommended to me was Tysabri. My doctor felt that Tysabri was still strong enough to keep my illness under control and I did not have to inject myself. Tysabri is a once a month infusion which really made me nervous, but I tried it anyways because I wanted my illness under control. For the two months I was on Tysabri I would be very sick for a few days afterwards unable to keep food down. I told my doctor that I could not continue taking something that caused me to be so sick and refused to go back for another infusion. I told y’all I am a very stubborn person, especially when it comes to what is best for my health. I am a little surprised I did not force my doctor into early retirement!

My doctor being the patient man he was talked to me about other options that were available for me. Luckily oral medicine was finally being released and we both agreed it was the best course of action for me. I would not have to inject myself with anything and I would not have to deal with infusions. I decided that Gilenya, which is a daily oral medicine, would be the best solution for me. We only ran into one very minor issue on Gilenya, my white blood cell count dropped to a very dangerous level, so instead of fight for a curetaking it daily, I would take it 3 times a week until my next blood test. Everything went very well on this plan and my next blood test came back great, so we increased it to four times a week. I have now been on Gilenya for 6 years now and went from taking it 4 times a week to daily and I am doing pretty well overall.

Although, last year in July I had so many people talking in my ear about what they thought was best for me that I stopped listening to my own thoughts, I guess you can say I was hearing too many voices! My husband thought that I had been on Gilenya for too long and needed to give my body a break because he remembered back when I first started it there was a protocol that said I should only be on it for 2 years and then get off of it for a short time, but be on something else. Now in his defense, I was having a lot of sinus issues and did some research on Gilenya’s website and found that there have been some cases of increased sinus troubles. I thought about this for so long and stressed myself to an extreme before deciding to try another oral medication. I did a lot of research on different medications before making the switch to Tecfidera. I went off of the Gilenya for one month to clear my system of it and went on Tecfidera, which is flare upanother oral form taken daily. I am not saying it was a bad decision, but I ended up having some serious issues. It was in October when I had the worst flare up I have had since being diagnosed. No one can say for sure if it was the stress I put myself through deciding to change medications or if it was the fact that Tecfidera was not strong enough for me. Well my doctor did tell me it was because the Tecfidera was not strong enough, but it was against her advice in the first place. Honestly, I do not have the best relationship with this doctor, my old that I trusted retired. After having a terrible MRI report, I decided to go back on Gilenya because it did so well for me for 6 years! Until there is a cure, I probably will not change medications again!

A very solid piece of advice I can give you is to avoid stress as much as you possibly can. I know it is hard to avoid stress because it happens to all of us, but stress is a HUGE trigger for flare ups. Honestly, I am giving you this advice because I am a walking talking stress case and it has caused me so many additional problems and pain! I don’t want to scare you anymore than you probably already are, but the flare up I already mention I had in stock-photo-concept-conceptual-mental-stress-at-workplace-or-job-abstract-round-word-cloud-isolated-on-452180749October, was solely due to stress! All that stress could have and should have been avoided, but it was not because I allowed stress to consume me and I am still dealing with some issues almost five months later. It was a very harsh lesson to learn, but I already knew what stress could do to your body and I just let it get the best of me. I have found the best way to combat stress is to find a hobby that you enjoy! My hobbies that I truly do love include reading and writing; I just wish I had focused more on my hobbies than I did in October and less worrying about my illness.

I want you to know that you are not alone with this battle. There are so many people out there that understand your struggles and will support you! I am always here for you if you have any questions or need to someone to vent to. I started my own blog in July because I wanted to be able to raise awareness of MS but also offer support to those in need. My blog is https://wordpress.com/view/fightmsdaily.com. I am a very strong believer in positive thoughts create positive things in life. I do realize it is not always easy to think positive when you are scared, in pain or suffering, but that is where it helps to lean on someone else! I can also tell you that following my dear sweet friend Grace’s blog will be helpful to you. Grace is pretty amazing and has a tremendous amount of strength and courage!

love

Always, Alyssa

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31 comments

  1. It is scary trying to decide which course of treatment to follow when being diagnosed, and even more frustrating when something that was helping stops working. I am so glad that you have found something that works for you now. The fact that Gilenya helps you (I can’t take it) and Tysabri helps me (which made you sick) really shows that we do need to listen to our own bodies and do our own research.
    Thank you for sharing your experiences and positivity with everyone Alyssa, you truly are an MS WARRIOR, and I am very happy to call you my friend

    Liked by 1 person

    1. Yes, Grace is wonderful and I always enjoy chatting with her! I hope together we can help many people! Thank you for sending a gal over. I know how hard MS can be, so I am always willing to do what I can for others!! Thank you for your kind words Kim!!!

      Liked by 1 person

  2. This is amazing Alyssa! I’m struggling with stress at the moment and I’m pretty confident that it is triggering numbness in my leg 🤔 thank you for sharing this! Will definitely be taking your advise to listen to your own body xx

    Liked by 2 people

    1. Stress can without a doubt trigger symptoms and numbness is definitely one symptom. It is so hard to avoid stress, like I already have said I am a walking talking stress case! I actually noticed one time when I got myself so upset and stressed, my pain increased drastically! I am so sorry to hear you are struggling with stress. If there is anything I can do to help or you need to vent, I am here for you! I hope you have a nice evening. Sending you love and comfort ♡!

      Liked by 2 people

  3. I always laugh when people tell me not to stress, it’s like saying don’t get scared now or….. whatever it is they say don’t do, my body immediately starts doing. Unfortunately it’s true though, stress aggravates symptoms which causes more stress….smh

    Liked by 1 person

  4. Beautifully written. Definitely great to show how the different meds have their own side effects. Kudos to your hubby remembering the suggested cut off with Gilenya. It’s great that he keeps up with things. My dearest is a great hubby but I can’t say he’d remember that. You’ve been fighting this fight a long time and are still such a positive happy soul. That’s inspiring all in itself.

    Liked by 2 people

    1. Thank you so much! I worked pretty hard on this post, it took a few days! My hubby remembered the cut off because he can be pretty amazing! He saw what I was going through with my sinuses and it made him think. The crazy thing is, the cut off time ended up going away. I try to have my hubby with me at appointments because I get too emotional and stop hearing what the doctor says, so he listens for me and fills me in later!
      I do think staying positive is so important and it does get hard sometimes, but negative thoughts only hurt more! Thank you so much for your truly kind comments ♡

      Liked by 2 people

      1. I do the same thing with Lance because I too get emotional and most times pissed at the dr so I stop listening too. Lol. That and he’s more eloquent when speaking than I am. Instead of me showing my ass he steps in and tells the dr what the issue is I’m having. I get frustrated and have a serious dislike for dr’s at this point.

        Liked by 2 people

      2. Our husbands are just amazing and can translate what the doctors says so much better! I am with you on the show my ass when the doctor says something I do not like, which is normally every word!! I really do not like my current specialist, I think she is an idiot!!

        Liked by 2 people

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