Guest Blog for Newly Diagnosed!

February 21, 2018February 21, 2018 ~ Positively Alyssa ~ 31 Comments

I 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 NOT 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 stopped 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 taking 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 another 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 October, 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!

Always, Alyssa

Newly Diagnosed with MS

February 16, 2018October 5, 2018 ~ msgracefulnot ~ 15 Comments

I have tried so many times to write a blog or make a video for someone that is newly diagnosed with MS, I write 1000’s of words, then I reread what I have written, only to realize the advice doesn’t apply to everyone.

The reason for this is that MS is not a “one size fits all” type of disease. I don’t mean because there are 4 different types of MS, I mean because it affects every single person differently! EVERY SINGLE ONE!

Not only will MS affect YOU differently than it affects your cousin’s sister’s uncle’s aunt that has MS, but any treatments YOU might try will affect YOU differently as well.

I have made this video, more than anything so that you realize YOU ARE NOT ALONE! As you wade through information on Dr. Google, and hear stories from other people PLEASE, PLEASE, PLEASE keep in mind that people are only sharing THEIR STORIES. (and negativity breeds negativity)

Some people will tell you to read everything you possibly can about MS. (Dr. google is a scary monster) Others may tell you to join support groups, Facebook groups, eat an all natural diet, take this drug or that drug. My cousin swears that “…..” works….BUT you need to pick what works for you.

MS is unpredictable. There is good and bad information to be obtained from the internet and social media. If you keep an open mind and are aware of the possibilities, you only prepare yourself for the worst case scenario. You can’t live your life in fear of the unknown, THAT alone can paralyze you.

Below is another video in which I talk about not only how I was diagnosed, but also how I “met MS”.

My story- being diagnosed with MS

So my advice to EVERYONE that has been newly diagnosed with MS or another chronic illness is to:

Take a deep breath
Take another one
Acknowledge that while this may suck, there are worse things in the world
Learn everything you can about your condition, BUT also pay attention to the source ( even if you learn what NOT to do)
Advocate for yourself and do what works for YOU
They call it “practicing medicine” for a reason. Get 2nd and 3rd opinions.
Surround yourself with positive people
Learn to laugh at yourself

As I mentioned at the beginning, it feels like a whole different lifetime since I was diagnosed, (and it has only been 20 years) New ideas and treatments are coming out and being discovered every day. Never give up!

If you are looking for a place to start your research, here is a link to the National MS Society.

If you need to talk reach out, send me a message, ask tons of questions. In the upcoming week, I have asked 3 other bloggers with MS to share their stories on this page, and or to share their advice about what does and doesn’t work.

This Best of luck to you on this journey!

MS Multiple Sclerosis Diagnosis

October 9, 2017October 8, 2018 ~ msgracefulnot ~ 6 Comments

Many people that have been diagnosed with MS can look back in their lives and identify times that they had MS symptoms long before they were diagnosed with the disease. When I tell my story though, I am only speaking about the events directly leading up to my diagnosis. In hindsight, I can tell you that I am grateful for the way things played out, but I certainly wasn’t when it was happening to me.

I was at work and a coworker friend of mine was kicking the back of my knee with her foot as we were walking down the hall. I don’t remember how many times she did it, or how many times I avoided tripping, but I do remember the one I went down on. Not only had I torn my nylons, but two fingers in my left hand went numb within the hour. It seemed strange, since I don’t remember landing on my fingers, but I shrugged it off. There were more important things to think about like how was I going to get even with Michelle for bruising my pride. I went to sleep that night, figuring the numbness would go away in the morning and didn’t give it a second thought. When I woke up the next morning my entire left hand was numb, and by noon from my fingertips to the middle of my forearm was numb. Over the next few days the numbness continued to spread up the rest of my arm and down the left side of my body to my left knee.

Call to the doctor

The order of events that happened next are kind of a blur to me. Maybe because they happened so quickly, maybe because I was terrified and tried to block them out, maybe because they happened almost 20 years ago. Within a week my doctor ordered Evoked Response tests, 3 MRI’s, a spinal tap, and enough bloodwork to save a nation. Then the call came. “We need you to come into our office to discuss your test results, TODAY.

As I type this, the hairs on my arm are beginning to stand up, and I can feel my breath catching in my throat. I don’t remember the words she used to tell me I had Multiple Sclerosis. I remember the silence that followed and the hopeless and pitiful looks she and her nurse were giving me. Somehow the numbness that I had been feeling during the past week seemed to take over my brain and my emotions. (pun intended). The doctor ordered a course of steroids for me and gradually I started to regain feeling in the reverse order that I had lost it. First my trunk, then my chest and shoulder, and eventually my arm except for my left hand which is still numb.

As I mentioned earlier that was almost 20 years ago, but that is where it started for me. In the last 2 decades I have learned and experienced so many things due to this disease that I think may be helpful to share with others. Living with MS is not new to me, but blogging is. If you’re willing join me on this new adventure of mine, please follow the blog, or Look me up on Facebook. Grace Fullnot (same picture I use here) If you do add me on facebook, please send me a short message saying “Hi”, I saw your blog, or something to that effect, so that I know you aren’t a robot.

If you are reading this because you have MS or think you might, please know that yes it can be scary, it’s ok to be mad, but it really is NOT the end of the world! There are many resources out there to help you with this!!!!!!