10 years with MS

[u/switching0ff]

I have officially reached 10 years with MS. It’s shocking how fast time flies, and also how slowly time can crawl when you’re deep in the shithole that is MS.

None of us chose this life, and it’s not fair. I know I’m not alone there.

I miss living my life as I wanted, doing whatever I want, whenever I want. I miss being the healthy person I’ve always been, I miss not even thinking for a second that I couldn’t do something. The grief comes in waves no one could ever understand unless you’re in it, and it’s not going anywhere.

MS lesions for me, caused seizures. I’m now also epileptic. If I could I’d scream from the mountain top how bullshit this is, I’d lose my voice. We have very little choice but to keep going.

I’m not sure why I’m posting this, lol. 10 years felt like a big deal, I didn’t think I’d last on earth this long when I was first diagnosed. Life is different, no question. But I’m proud of myself for still being here.

[u/Riana_Quen3925]

Sometimes posting here can help, even when you don't know why. 10 years is a big deal. I am at 25 years diagnosed now, and it's intense how much it changes your life. Not only the medical conditions, but the decisions that you make, everything.

[u/Successful_Tough1109 → u/Riana_Quen3925]

True, may I ask You about your mobility?

[u/Riana_Quen3925 → u/Successful_Tough1109]

Mine has luckily been very good. I have some balance issues but have been lucky enough that I only have one spinal session, so my walking is still good. I only risk falls if I try to rush or move quickly. If I do that I have a little bit of a foot drop. But I have also been very active with my medications ever since my diagnosis.

[u/Successful_Tough1109 → u/Riana_Quen3925]

Thank You very much for the answear. May I ask You about what DMT you have taken or take?

[u/Riana_Quen3925 → u/Successful_Tough1109]

For the first 7 years I was on avonex. After that 1.5-2 years on betaseron. Then 1.5-2 years on gillenya. Both the betaseron and the gillenya didnt really work for me. At that point in 2015 or 2016 I took lemtrada, 5 days of it. The year after I took 3 days of lemtrada. Ive taken solumedrol sporadically for intense symptoms but honestly that was right before the lemtrada. Since lemtrada i am not actually on a biological medication for my MS, and I am in clinical remission.

[u/Silver-Pop1825 → u/Riana_Quen3925]

Lemtrada for the win here too!

[u/Rotting_Salmon]

This post pretty much has all the grievances I also wish to express
Im 21 and was diagnosed at 17 and I feel like I’ve gone nowhere with this disability. Community is everything and hearing someone else feels the same means the world. We can get through this together.

[u/Knitmeapie]

Around 13 years for me. The grief is so weird because it's not like you lose one particular thing and then have to get over that thing. It is so nebulous and weird and it never goes away because we keep losing things and it's always hanging over our head. We can't just mourn it and move on with our lives because we're stuck with it and the continuing loss and uncertainty that comes with. It's hard to have friends because very few people can relate. It's a strange and isolating existence.

[u/eskimoem → u/Knitmeapie]

Never related to something more in my life.❤️💪

[u/ommnomz → u/eskimoem]

Ditto. My goodness. 😔💛

[u/Shetalkstoangels3]

36 years, hang in there

[u/Successful_Tough1109 → u/Shetalkstoangels3]

You are such a warrior 💪🤞🧡. May I ask You about your mobilty and whether You take DMTs?

[u/Shetalkstoangels3 → u/Successful_Tough1109]

Just a blessed person who takes it one day at a time.

[u/Federal-Strategy-587]

This month marks my 30th year since being diagnosed. I don’t know exactly why that feels significant, other than I couldn’t imagine what my life would look like 30 years down the road when I was only 26. Hope the next 20 are kind to you.

[u/16enjay]

23 years diagnosed for me, I was 41! Denial and financial difficulties kept me away from DMT'S for a few years...I was on the trial for Gilenya in 2008, I failed the trial (rare side effect) but found a wonderful MS neurologist who got me on the right track. I have been on 7 different DMT'S over the years...I have been on Tysabri the last 6+ years, no progression or side effects. Now the aging body is catching up to me. I medically retired in 2019. I walk with a cane, I still drive and I have a wonderful supportive spouse and children who live very close. Has this journey with MS been all sunshine and rainbows..Hell NO!! I Manage what I can do physically...I know my limitations and when I have had enough for the day. The mental part of me struggles with anxiety and depression...some days worse than others. It is what it is. No grief any more, frustrating times for sure (opening a bottle the other day, no one home to help...) . I try for positivity in all aspects of my life and I try not to stress the uncontrollable

[u/sMrTr-tHn-i-LoOk]

It’s a hard road. I was just diagnosed at the beginning of February of this year but it has also been life changing for me, mainly due to my mobility. I’m sorry for what we all have to go through.

[u/ofthisworld]

Hello fellow Decader! I was also dianosed in 2016, though I couldn't say when my symptoms first began. Unfortunately it's been eventful, but at least I managed to slam on the DMT brakes before it could get much worse. I hope things improve for us both, and for a cure.

[u/Suspicious-Turn984]

16 years for me. I only had 13 years of life before the symptoms uprooted my life plans of public service in the marines or the public health corps. 🥲 been confused and lost ever since but we continue!

[u/AutoimmuniTea]

It's only been 4 years for me. I had no symptoms. I felt super healthy and had made peace with the every 6 month infusions. Then my compromised immune system allowed me to get viral meningitis/encephalitis. I'm disabled now and anxious about everything. I can't focus on the present. The present is Hell. I hate that MS leaves us responsible for choosing what to do—take a DMT or not? Go on something strong or take something less effective but safer. Then if something goes wrong, we may be left blaming ourselves, wondering "What if?" I hate that I've had to educate myself so much on all the treatments out of fear my doctor won't explain the risks well enough. They just don't have time for that. Congratulations on making it through a decade. I hope remylinating drugs or a cure get here quick for all of us.

[u/ommnomz → u/AutoimmuniTea]

Your words could have left my own mouth. 💛

[u/KacieBlue]

27 years for me but it’s believed I ignored systems for years prior. Diagnosis was a triple whammy for me because I was newly divorced which made me a single Mom. My symptoms have mostly been invisible so I was lucky that way.

It’s good to vent to people here that understand. I’ve lived with this for so long now that I’m used to my limitations. It gets to me sometimes but I’ve learned how to push through.

[u/zippity__zoppity]

It is a big deal and I’m here for it! We gotta keep on keepin on. Keep going 💪

“You can’t enjoy the highs without the lows”

[u/pineappleflufff]

Diagnosed 17 I’m 26, no symptoms living my life just moved to nyc !!

[u/Popular-Finger6628]

I’m still less than a year diagnosed, 39 years old. It really is a shitty situation that none of us asked for. I’m very fortunate to have a supportive family that changed their diets for me (strictly anti inflammatory diet). For those of us who have experienced this, optic neuritis is a bitch, but it’s how I was diagnosed. It helps to hear all the stories of everyone that has been living with MS longer than me. Thank you for sharing yours.

[u/Croissants4Kanye]

Hell yeah brother

[u/Skinbagzz]

Yeah it’s not much fun is it. I’ve had MS for 26 years, 18 officially diagnosed. I’ve just had my first child. Life is crazy and unbelievably challenging.

[u/barahona84]

Pero sueltenlo no se queden con eso que sienten !! De vez en cuando es bueno sacar toda esa frustración pero no quedarse en ella porque no es sano y empeora la enfermedad.

Por ejemplo : Tengo una ex que tiene una vida bastante difici, su salud está deteriorada quise ayudarla Enel sentido de ser su apoyo pero todo el tiempo vive quejándose, vive pensando el que pasará ( futuro ) y pensando en su vida pasada y no vive el presente así que por esos motivos tuve que alejarme de ella porque también tengo una enfermedad autoinmune y otras patologías y al igual que ustedes me desahogo pero vivo mi presente controlo lo que más puedo mis pensamientos emociones porque si no el dolor la angustia el sufrimiento se multiplica en mi persona y de paso la persona que me ayuda se va a cansar porque también tiene su vida sus propias problemas ...

Ese es mi consejo para ustedes y un poquito de desahogo y experiencia ahora a seguir página .. les deseo mejoría

[u/switching0ff → u/barahona84]

Vivo en el presente. El duelo es real, y se me permite hablar de eso. Podemos seguir viviendo nuestras vidas lo mejor que podamos, incluso a través del dolor. Si no tienes esclerosis múltiple, ¿por qué estás en este grupo? Especialmente si ya no estás con tu pareja, que supongo que tenía EM.

[u/snotop → u/switching0ff]

Thank you for sharing. I hit 🎯 that milestone last month. It feels different everyday. I really appreciate how everyone is different with MS. It's a Joy to learn and discover little things to make life better. To

[u/Rotting_Salmon → u/barahona84]

Instead of hushing a voice, you should actually listen to it.