Green Light

new journeyHappy Friday Eve Y’all! I hope you had a good Thursday. So, I told you I would keep you updated on when I was going to be able to start my Tecfidera journey. I received the news this morning that, although my blood count is not what you would consider normal, I am able to start the Tecfidera. My white blood cell count is still low, but has been rising, so I guess that is a good sign.

I am trying to decide if I am going to start the new medication tomorrow, or wait for Saturday, just in case I have any side effects. I know the most common side effect is flushing. To be honest with you, I have already been experiencing some crazy hot and cold flashes, but I guess that could be something viral. Who knows? Honestly, I probably wouldn’t new journey 2experience any side effects the same day of starting the medicine and anything I would experience would probably occur a few days later. For those of you that have been on Tecfidera, would you recommend I start this medicine tomorrow or wait until Saturday? I guess because this is something new, I am nervous about what might happen. Logically, I know it is best to be positive about new things, but I am really bad about not thinking about all the side effects the doctors warn you about. I know I was terrified about starting the Gilenya 6 years ago because of all the side effects. Even though I did have several negative side effects from the Gilenya and have felt better in some ways being off of it, I didn’t experience anything deadly and the MS didn’t progress. 

new journey 3I am going to keep my word and stay positive. I just need to get past the hurdle of starting this medicine. It is crazy to say that I am excited about the possibilities of Tecfidera and nervous at the same time. This might be the perfect treatment for me and if it isn’t, I have done enough research to know what could be next. Heck, I could always go back on Gilenya or maybe there will be something new I stumble across. I just need to get past all my nervous jitters and just move forward. 

It has been a couple of months that I have been off of any medication to slow the progression of the Multiple Sclerosis down. My sinus issues have gotten so much better, which has been great. My back and leg pain have remained steady and I haven’t had any relief at all, which is so incredibly frustrating. I do know that one of thehope 2 most important things I have to do is keep my stress level low. That is so much easier said than done. This blog has helped me maintain my stress so much. Writing and hearing your feedback has been a great relief. I have built several connections through this blog and all of you have been so supportive and encouraging. There is so much support for those suffering with chronic diseases out there! If you remember from my first post, I want to be able to learn from each of you and I want to be able to help others as well. Helping others is so important to me. I am going to continue remaining positive with my new journey of treatment and really hope for the best. 

Thank you for reading my long rant and update! If you have any thoughts or advice, please leave a comment. I always read and respond to your comments as soon as I am able to. I really appreciate all the support and encouragement you all have given me. I hope you have a great evening. And, thank goodness tomorrow is Friday! For some reason the short weeks always seem so much longer!

Hope for cureAlways, Alyssa

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31 thoughts on “Green Light

  1. I really feel for you as I wasn’t diagnosed until my late 40s. Keep fighting and, where it feels right, take some medication. I never had any MS modifying drugs and went from ‘mild/benign’ MS to secondary progressive in nine years.

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  2. Happy Friday Eve. Yes, the short weeks seem to be the longest. Research Copaxone, it is syringe. I had severe headaches scene I was 20. I took every test possible that showed nothing except MRI. My doctors didn’t want to expose me to radiation if they didn’t have to. 12 years later I was diagnosed with MS. It felt like a Mac 10 truck smacked me on one side of my face. My optic nerve was so inflamed I couldn’t see out of one eye. I was immediately put on Copaxone. About 60 days later I got pregnant. I had to stop, I went through pregnancy full-term and 1 year of nursing. With the mercy of God me and my son were fine. Now being on the same medication from day one I have not had a relapse and keep praying that I don’t get one. i know this is not for everyone, I share my story to hopefully help others. I did recently change dosages, but stayed with the same medication. You are in my prayers along with all of us who have chronic disorders. Take Care and God Bless. Keep Smiling and Laughing in the face of the enemy! ;o)

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    • WOW you and I had the same issue to start our MS journey. I went blind in my left eye. My sight came back but it was so scary. Thank you so much for your comment. I am still struggling with deciding if I should start my new medicine today or just wait until tomorrow when I am at home. I am at work now and it is so busy today, plus I have so many other things on my mind. I might be a little on the stressed side today!!!! I really appreciate your kind and encouraging words!! Take care and have a great day!!

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      • My apologies for not getting back sooner. So much has been happening over the last month or so. Having MS triggers so many other problems. Yeah, I was scared at first but the pain was so fierce that I was more worried about getting rid of the pain versus seeing. I stated treatment immediately. After the inflammation went away everything was fine and has been. I still have good and bad day but I fight through them. I hope you are doing well on your new medication. Just a tip if you can avoid starting something new during a work day or week and wait until the weekend, would be better. This way if you have any side effects at least you are at home in a comfortable environment. Take Care.

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      • Thank you Sal! I was on the Tecfidera for 2 months but then had a flare up and my doctor says it isn’t strong enough. I am going back on Gilenya. I was already on it for 6 years but now that I was off for 3 months I have do the entire initial process again. On October 30th, they are sending a doctor to my home to do the 1st dose. They have to monitor me for like 6 hours. I am sure it will be fine. It might be weird having a doctor in my home watching me for several hours. I hope you are doing well! Take Care!!!!

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      • Hi Alyssa, Ho wow. I’m sorry to hear that the medication did not work out well. Good thing is that you do know what works until something else come up that you may try. Yeah, ti can be a little weird to have medical aid in your home. At least it is only for several hours. Make the most of it and keep your joy. As for myself I have my ups and downs but pushing my through. I have a heart flutter that is new so I am working on finding out what the cause(s) are. Have you tried to herbal anything with your process of MS. I am learning the more we go organic, herbal, homegrown, natural herbs and spices more green less meats, and more foods for our blood types helps all of our symptoms better. I hope everything goes well going back to your regular medication. Take Care.

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      • I do know that Gilenya kept my flare ups at bay. I should have never stopped taking it. I just hope the damage the new lesion caused will not be permanent. The doctors can not tell me 100%, which is annoying! I can write, read or watch TV while the doctor is here. They told me I don’t have to entertain. I have never had anyone in my house for medical treatment. I am glad it is only for a few hours! I hope the heart flutters go away for you. Could it be a medication causing it? I have not tried anything herbal. Do you have any suggestions? Thank you so much for all your great comments and support!!!! Take care and I really do hope the flutters stop!

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      • This is how we learn what our bodies can and cannot take. If you didn’t do this you would never know what things could and are happening. Look at it as a learning lesson and a way for you to teach and share with others. Holding a good conversation helps the time pass also. Thank you! me to. It is scary and annoying. They have calmed down allot but I still have the chest pain that is irritating. Omega 3, more fish, less red meat, more fruit and veggies, turmeric, cayenne (these are also blood thinners. If you use these only use one at a time not both at the same time and only a little here and there and never before surgery) Italian herbs, spices, & foods, Mediterranean herbs, spices, & foods. Papayas, Mangos, Cactus fruit. There is no much herbal and natural foods that does help. I have more information with I get all my notes and info together I will post for everyone. It is some really enlightening information. Right now we are working on process of elimination blood work looks good.

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      • I know it was best to try Tecfidera just for my own peace of mind. It was against doctors suggestions because they kept saying it would not be strong enough. They told me too many times that my MS was aggressive, which honestly just made me mad and want to prove them wrong. I am VERY head strong, too much for my own good. I really hope I did not cause my flare up to happen by not listening.
        I am so sorry, I can imagine fluttering of the heart would be scary. I know when I get to anxious my heart will race and that is scary enough. Thank you so much for the advice. I honestly do not eat read meat but once in a blue moon. You might think I am crazy, but I feel guilty eating red meat and I honestly hat steak. I wish you the best of luck with getting things figure out with everything!!!! Take care Sal!!!!

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      • This is how we learn our lessons. Yes, hopefully there is no damage done. I am the same way, Stubborn. Suggestion, In the future analyze what the doc’s have to say and then search for others who have the same or similar symptoms or aggressiveness you have and do a compare & contrast, if you haven’t done it this last time. We are a team and we all have to stick together. Don’t thank me, I am the messenger. Thank God. Not sure of your beliefs but things happen for a reason. If I can help one person to make some kind of difference that is one more person that is safe. Have a wonderful weekend.

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      • I do analyze what the doctor says and do my own research before I make any final decisions. Now that I know several people with MS on my blog, I have a way to ask others questions. I hope you have a great weekend as well! Take Care Sal!

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    • Do you know when you are going to be starting it? I am going through a lot of stress today, so it might not be the best day to start it. I think I am going to wait until tomorrow when I am not at work stressed and will have time to rest if I need to. What do you think? Can you tell my nerves are kind of shot already today? There is so much on my mind!!

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      • Just when I feel abit better. Getting over a relapse and just started a new job and I know the first 3 weeks can cause tummy problems. Will be in a few weeks though. I think just start them when you’re ready. Tomorrow sounds better. A day won’t make any difference. Hope you’re ok. xxx

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      • Thank you so much for your comment. Oh goodness, tummy issues for a few weeks doesn’t sound fun.

        You have a lot going on. Getting over a relapse and starting a new job! Do you like your new job? I will be able to tell you how the Tecfidera treats me starting tomorrow. I am waiting to start until tomorrow. I hope you are feeling well!!

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      • Not everyone gets them but thats the one I’ve heard people get the most. Lasts about 3 weeks apparently but helps if you take it with high protein food. Peanut butter seems to be a good one! 🙂
        New jobs not going great so far, a few issues have arisen but hopefully they’ll sort out. Let me know how you get on. 🙂 xxx

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      • That is actually what the NP said about the medicine too. I am going to have a piece of bread with peanut butter on it tomorrow morning when I take the first dose. Hopefully it will all be fine.

        I am sorry the new job is having issues. New jobs are always difficult at first but things settle down after a little while. Do you like what you are doing? Please just remember to take care of yourself and not let people be unkind to you!

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  3. I think that, if/when you do decide to start it, to just have some days free and some time to yourself to make sure you’re able to de-stress, work through any side-effects (though there may be none at all – positive thinking!), eat regularly etc. It’s encouraging that the blood count is moving in the right direction. Fingers crossed and wishing you the best! 🙂

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      • Sorry to hear that work is so stressful, that’s pretty much the last thing you need right now. I hope you get to have the weekend to yourself to get some R&R! 🙂
        xx

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      • Yeah, I know right!? I definitely do not need any added stress but for some reason it seems to be coming in multiple directions. I am going to just hide out this weekend and try to not leave my house:)! Thank you so much for your kindness!! Take care!!

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  4. I never read the fine print about all the terrible things any of these meds can do. Hearing it from my doc is bad enough. I know most of the stuff I take can theoretically make me extremely sick, but nothing is perfectly safe. So you just have to have faith that everything will work out.

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    • Medications are all a little scary. Everything has some kind of side effect which then requires another medication. It is so annoying! I decided that I am waiting to start the Tecfidera tomorrow. That way I am home! Thank you for your comment!

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