I don’t celebrate but I should celebrate the years I have persevered with this disease. I just had my MRI and since I’m on Ocrevus I’m confident that it will be another ‘no significant change’. I’ve consistently had no active lesions. I feel lucky. I’m working on eating healthier and being more active.
Congrats! I am proud of you! 🤗🧡
I usually recognize the day by trying to fundraise for the MS society and/or by doing something for myself to make me feel good and sharing my story on social to spread awareness.
Living with MS is not a choice any of us had, but it doesn’t mean we shouldn’t be proud of all we overcome and accomplish despite it.
I was diagnosed on Halloween in 2020. It was not a good day for me but I am so proud of myself and how much I have been able to accomplish since my diagnosis 3 years ago. I do try one goal for myself every year to do something I said I couldn’t or wouldn’t do and this helps my mental health a lot.
Someone here once shared that they get cake, so I copied them and get a diagnosaversary cake every year. It’s a great way to have something a little fun and light on an otherwise heavy day. I have asked bakeries to write “fuck ms” or something to that effect on them which makes me laugh when I open the package.
Just had my first MSversary this past February. I made cupcakes for the people in my life who had been invaluable at helping me navigate the beginning madness and were just 'there'. It felt good to be able to take a moment and let them know how important they were to me.
I don’t know the exact date but it was the Monday before Thanksgiving. So far I’ve just dedicated that week to being extra grateful for what my body is able to do despite my disease, and enjoying a delicious meal and hike with my fiancé :)
I can’t remember the exact day but I think it was the week before Thanksgiving. I know it was after the election in 2008. I don’t celebrate it though. I just kind of realize that yet another year has passed.
"How do you celebrate your diagnosis anniversary?" This is a question I have never seen. Next Saturday, May 11, 2024, will be the 29th anniversary of my diagnosis with multiple sclerosis. I had just turned 30, 2 months, earlier. I have been diagnosed nearly half my life with MS. I'm now 59 and on disability and have been for 14 years. Is it a date I forget? No....that night changed my life forever, and I spent 12 years in clinical trials at UCLA Multiple Sclerosis Research 95-07 trying to help them find a treatment many of you reading this are on or at least heard of a few of the FDA approved drugs that they used on me. Axonex, Copaxone, Rebiff, you don't know about the failures that were not approved and that hurt or even killed people. While I recognize that day, there is nothing in to celebrate.
Thanks for your volunteering. I don't remember the day or year. I remember wanting to get out of the hospital to light up after Xray, and I was at U of I and used the library to research the treatment possibilities, which were few. No internet. I was told "probably". I remember Bee Stings were looked into at the time. Had my amalgam fillings removed. Went on Betaseron when it came out and for the next 23 years. Did the Swank diet. I'm a few years up on you. Continued good luck...
I remember Betaseron was all there was when I was dxd, and it had only been approved for I believe two years. There are some things you just don't forget, and the night the neurologist told me I have less than two years to live and to get my affairs in order will be with me until the end. I'm now in end stage MS and in palliative care. My wife and I are moving to Phoenix, so I can enter a final clinical research trial for progressive MS at Mayo Clinic. I also remember the bee venom trials in 1998. I volunteered to try it and flew to Mayo Clinic in Rochester, Minnesota. I was there for two weeks, and they were injecting the venom into my spinal cord. I have to tell I felt awesome after the treatments but it didn't last long so they stopped the trial however to this day if I see a bee I try to catch it and get stung for the rush. Peace.
I had intended to acknowledge your MS and mine might be different. Wow, I'm talking to a "Bee Stinger"! I think it's all usefull for newbies to see where things have been You put it well. Good luck to you.
It's been a very long road for me many many experimental drugs many many FDA research tests for diagnostic tests that went wrong for people. If you really want to know how long I have been in this I was in both the Thylidomide trials and the Linomide trials if you look up the Linomide trials you will see how many people died. I was lucky I ended up with cancer however, the Linomide trials are considered the largest clinical trial disaster in recent history. You can read the opening of Dr. Barbara Guiser MD. "Primer on Multiple Sclerosis"
I did reply I don't know if you saw it. If you want to know how long I have been in this I was in both the Thylinomide and Linomide trials if you look up the Linomide trials they were considered the greatest disaster in recent history. A lot of people died I ended up with cancer if you look it up it's in the opening of Dr. Barbara Guisers MD, "Primer on Multiple Sclerosis"
I got your replies. I couldn't find copies of the primer to read. However Linomide and Thylidomide sound rough with recomendations that while there may be some + effect for MS, a safer route should be sought (my words). That was 2003 ish. Otherwise, sounds like a disaster for other conditions. Your experience highlights the willingness of people to do something, but in those earlier days risk appears to have been much more tolerated. Today, people are expecting a cure when there still isn't one. You know too, that PPMS is much more difficult to treat than RRMS. We can both write books but let me say thanks for your courage and hang in there as much as you want.
I have a copy, I know. Barbara, she and I go way back. Here is a link to the primer https://global.oup.com/academic/product/primer-on-multiple-sclerosis-9780199341016?cc=us&lang=en&
Thank you for your kind words, I agree with what you said about today's clinical trials and today's MS patients that today's folks want cures, and there is NO cure. The average person doesn't understand what the purpose of a clinical trial is.
I went into trials three months after my diagnosis. However, the head researcher at UCLA Multiple Sclerosis Research then was Dr. Lawrence (Larry) W. Myers MD. When I came into volunteer before we did any paperwork, he asked me straight up, "Why are you here?" I told him I have been given less than 2 years to live, so I wanted doctor's to learn as much as they could before I died.
Larry was very serious and quite stoic. He asked, "Are you expecting to be cured?" I told him no. That would set in motion a lifetime friendship and when Larry retired in 2007 he sat with me and my now third wife of 19 years and said to me, "Roy your the bravest person I have ever known. It didn't matter what happened in the last drug trial or medical procedure trial. All you would say when one ended was, 'So what's next.'" After 29 years with this disease and knowing there will NEVER be a cure, Larry made that very clear and knowing I'm coming to the end of my life I ask myself who's going to step up? Clinical trials are not for everyone. However, without them, there will be no treatments, no new DMT's, why I'm moving to Phoenix to start a new clinical research trial at Mayo Clinic there for SPMS. Stay healthy and enjoy your time. Life is brief.
Why not take the day for self-reflection on your personal journey and celebrate that you live in a world where science has advanced enough that we aren’t dying as prematurely as people who were diagnosed before? There are a lot of things to be grateful for in life and finding out that I have MS instead of being in diagnosis limbo forever is one of those things. Sorry if that’s too “cringe” for you.
Cake. Or some sort of fancy ass dessert. It's listed as MS Day in my calendar.
I don’t celebrate but I should celebrate the years I have persevered with this disease. I just had my MRI and since I’m on Ocrevus I’m confident that it will be another ‘no significant change’. I’ve consistently had no active lesions. I feel lucky. I’m working on eating healthier and being more active.
Yaaassss!!!!! That's the Spirit!!!!! This Disease Does Not Define Us!!! 😊
I don’t. My first one was this past winter and it was a tough day for me. Going forward, I am just going to try to put it out of my mind every year.
I don't even remember what day I got diagnosed :D .
🥂🌹🍻
I do not actually know the day of my diagnosis, so no celebrations for me. :P
Congrats! I am proud of you! 🤗🧡 I usually recognize the day by trying to fundraise for the MS society and/or by doing something for myself to make me feel good and sharing my story on social to spread awareness. Living with MS is not a choice any of us had, but it doesn’t mean we shouldn’t be proud of all we overcome and accomplish despite it. I was diagnosed on Halloween in 2020. It was not a good day for me but I am so proud of myself and how much I have been able to accomplish since my diagnosis 3 years ago. I do try one goal for myself every year to do something I said I couldn’t or wouldn’t do and this helps my mental health a lot.
“Congratulations” on keeping a sense of humor and still making joy and having fun in spite of MS! JUNK FOOD!!!
Someone here once shared that they get cake, so I copied them and get a diagnosaversary cake every year. It’s a great way to have something a little fun and light on an otherwise heavy day. I have asked bakeries to write “fuck ms” or something to that effect on them which makes me laugh when I open the package.
Just had my first MSversary this past February. I made cupcakes for the people in my life who had been invaluable at helping me navigate the beginning madness and were just 'there'. It felt good to be able to take a moment and let them know how important they were to me.
I love this so much!
I don't remember the date I got my diagnosis. A treat day is definitely a good idea though.
I don’t know the exact date but it was the Monday before Thanksgiving. So far I’ve just dedicated that week to being extra grateful for what my body is able to do despite my disease, and enjoying a delicious meal and hike with my fiancé :)
usually just pray to God to keep me safe and thank him for keeping me alive another day/year. Celebrate with a little dessert that night too.
Mine was around Valentine’s Day so I get valentines candy
I never remembered the date of my diagnosis. MS brain life 😫
Oh god. I don’t even remember the date. Why would you bother?
Cake. Because it is an excuse to eat cake.
hahaha. Good point! I'm gonna get birthday gifts for all my traumas!
I can’t remember the exact day but I think it was the week before Thanksgiving. I know it was after the election in 2008. I don’t celebrate it though. I just kind of realize that yet another year has passed.
I was diagnosed 4-20-2019. How I celebrate that day is......Well you know!
"How do you celebrate your diagnosis anniversary?" This is a question I have never seen. Next Saturday, May 11, 2024, will be the 29th anniversary of my diagnosis with multiple sclerosis. I had just turned 30, 2 months, earlier. I have been diagnosed nearly half my life with MS. I'm now 59 and on disability and have been for 14 years. Is it a date I forget? No....that night changed my life forever, and I spent 12 years in clinical trials at UCLA Multiple Sclerosis Research 95-07 trying to help them find a treatment many of you reading this are on or at least heard of a few of the FDA approved drugs that they used on me. Axonex, Copaxone, Rebiff, you don't know about the failures that were not approved and that hurt or even killed people. While I recognize that day, there is nothing in to celebrate.
Thanks for your volunteering. I don't remember the day or year. I remember wanting to get out of the hospital to light up after Xray, and I was at U of I and used the library to research the treatment possibilities, which were few. No internet. I was told "probably". I remember Bee Stings were looked into at the time. Had my amalgam fillings removed. Went on Betaseron when it came out and for the next 23 years. Did the Swank diet. I'm a few years up on you. Continued good luck...
I remember Betaseron was all there was when I was dxd, and it had only been approved for I believe two years. There are some things you just don't forget, and the night the neurologist told me I have less than two years to live and to get my affairs in order will be with me until the end. I'm now in end stage MS and in palliative care. My wife and I are moving to Phoenix, so I can enter a final clinical research trial for progressive MS at Mayo Clinic. I also remember the bee venom trials in 1998. I volunteered to try it and flew to Mayo Clinic in Rochester, Minnesota. I was there for two weeks, and they were injecting the venom into my spinal cord. I have to tell I felt awesome after the treatments but it didn't last long so they stopped the trial however to this day if I see a bee I try to catch it and get stung for the rush. Peace.
I had intended to acknowledge your MS and mine might be different. Wow, I'm talking to a "Bee Stinger"! I think it's all usefull for newbies to see where things have been You put it well. Good luck to you.
It's been a very long road for me many many experimental drugs many many FDA research tests for diagnostic tests that went wrong for people. If you really want to know how long I have been in this I was in both the Thylidomide trials and the Linomide trials if you look up the Linomide trials you will see how many people died. I was lucky I ended up with cancer however, the Linomide trials are considered the largest clinical trial disaster in recent history. You can read the opening of Dr. Barbara Guiser MD. "Primer on Multiple Sclerosis"
I did reply I don't know if you saw it. If you want to know how long I have been in this I was in both the Thylinomide and Linomide trials if you look up the Linomide trials they were considered the greatest disaster in recent history. A lot of people died I ended up with cancer if you look it up it's in the opening of Dr. Barbara Guisers MD, "Primer on Multiple Sclerosis"
I got your replies. I couldn't find copies of the primer to read. However Linomide and Thylidomide sound rough with recomendations that while there may be some + effect for MS, a safer route should be sought (my words). That was 2003 ish. Otherwise, sounds like a disaster for other conditions. Your experience highlights the willingness of people to do something, but in those earlier days risk appears to have been much more tolerated. Today, people are expecting a cure when there still isn't one. You know too, that PPMS is much more difficult to treat than RRMS. We can both write books but let me say thanks for your courage and hang in there as much as you want.
I have a copy, I know. Barbara, she and I go way back. Here is a link to the primer https://global.oup.com/academic/product/primer-on-multiple-sclerosis-9780199341016?cc=us&lang=en& Thank you for your kind words, I agree with what you said about today's clinical trials and today's MS patients that today's folks want cures, and there is NO cure. The average person doesn't understand what the purpose of a clinical trial is. I went into trials three months after my diagnosis. However, the head researcher at UCLA Multiple Sclerosis Research then was Dr. Lawrence (Larry) W. Myers MD. When I came into volunteer before we did any paperwork, he asked me straight up, "Why are you here?" I told him I have been given less than 2 years to live, so I wanted doctor's to learn as much as they could before I died. Larry was very serious and quite stoic. He asked, "Are you expecting to be cured?" I told him no. That would set in motion a lifetime friendship and when Larry retired in 2007 he sat with me and my now third wife of 19 years and said to me, "Roy your the bravest person I have ever known. It didn't matter what happened in the last drug trial or medical procedure trial. All you would say when one ended was, 'So what's next.'" After 29 years with this disease and knowing there will NEVER be a cure, Larry made that very clear and knowing I'm coming to the end of my life I ask myself who's going to step up? Clinical trials are not for everyone. However, without them, there will be no treatments, no new DMT's, why I'm moving to Phoenix to start a new clinical research trial at Mayo Clinic there for SPMS. Stay healthy and enjoy your time. Life is brief.
Every time I see a post like this I cringe, there are other things to "celebrate", look up the definition. I always felt it was morbid to do that.
Why not take the day for self-reflection on your personal journey and celebrate that you live in a world where science has advanced enough that we aren’t dying as prematurely as people who were diagnosed before? There are a lot of things to be grateful for in life and finding out that I have MS instead of being in diagnosis limbo forever is one of those things. Sorry if that’s too “cringe” for you.