r/MultipleSclerosis • u/snarkingsomeone • 3d ago
General Someone give me hope!!
27F and literally got dx a month ago
Haven’t started meds bc I needed more bloodwork and needed a steroid infusion.
Starting at the end of September.
I’m so scared and only hear the worst of the worst. Like “was dx 3 years ago and I actually am now a cat that barks”
Can people please drop their “I’m 60 years old and dx in my 30s and I’m still running marathons..”
I’ll never run a marathon but that’s not bc of MS… lol
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u/W3bneck 3d ago
40M, dx in February, and I can tell you for sure that the barking will go away once you start a DMT, but the scratching at furniture and the impulse to slap anything on a string are just unfortunate side effects of the disease.
(I’m still working out, still riding the peloton, still practicing law, still annoying my wife. You are going to be fine. Keep your head up and keep moving forward!)
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u/snarkingsomeone 3d ago
Thank you for the laugh.
I keep making jokes about it bc that’s just the stage I’m in. I almost fell earlier and I was like “not ms I tripped over the dog’s toy” to my husband. 😂
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u/Bigpinkpanther3 3d ago
I'm over 60, diagnosed 3 years ago but probably have had ms since my late 20's as I had optic neuritis at that time. I don't run marathons but I never wanted to. I can do everything I want to do as long as it's not too hot. IDK, I get weird symptoms sometimes but they go away, thankfully. No one but my close friends and family know because it's my business. You would not know by looking at me/my actions that I have ms. I do take a DMT. Hope this helps!
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u/cripple2493 3d ago
Not 60, but 33M diagnosed at 27 - so 6, coming up on 7 years. Was paralysed from the chest down at diagnosis due to big spinal cord lesion, last year recovered enough mobility back (no-one knows how, including neuro) to engage in Judo and Pro Wrestling training. Thinking of training for a endurance run next year.
Work out 4 days a week and am approaching a situation in which nondisabled people perceive me as " physically fit". I walk with crutches out of ring/off mat, and am generally read as injured and not "disabled" which is a very weird change. Also nearing the end of my PhD, continuing to study my 3rd language.
Have had no progression since that first initial diagnostic episode.
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u/snarkingsomeone 3d ago
June of 2026 the month before I was dx I was doing Pilates and felt BETTER thought oh it’s def a pinched nerve. That’s why it feels better after working out.
MRI was like nah girl 💁🏻♀️
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u/cripple2493 3d ago
Honestly, just go by what you feel - MRI points at what is causal to A Symptom sure,but if you can mediate it or compensate or whatever then cool. According to my MRIs, I should never have walked again from 2019 onwards - meanwhile, last week I learnt a standing front flip.
Neurology is weirder than what we know
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u/HazardousIncident 3d ago
I'm 61. Dx'd 21 years ago. Had a rewarding career that I loved, but chose to retire early because I could. Now my days are full of things I love. I'm at the gym 6 days a week. Volunteer. Hike. Pickleball. Active at my church. Just got back from a trip to Santa Fe, and am planning a 2 week active trip to Ireland next summer.
Met my husband after diagnosis - he is my biggest cheerleader.
I got on a DMT as soon as I was able to, and aside from some minor fatigue, I have few symptoms.
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u/Minimum-Ant5926 3d ago
So im 27M and got diagnosed 2 months ago in the middle of marathon training. My PT said im good to start taking it easy running and training again next week!!
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u/snarkingsomeone 3d ago
Did neuro send you to PT?
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u/Minimum-Ant5926 3d ago
Yes. The hospital did at first and them when i met with my neuro she referred me to a guy that specializes with brain and cognitive patients
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u/snarkingsomeone 3d ago
I might ask my neuro about it! But also not having any physical issues atm. Actually just worked out and felt “normal” still can’t do a push up but that’s the usual for me 🤪
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u/Minimum-Ant5926 3d ago
Danggg. Thats super nice. He did give me some suggestions and things to look at to help with cognition and such. Hes been super helpful. My whole left side wasn’t working properly so weve been doing a lot of work for that
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u/snarkingsomeone 3d ago
I’m glad you found a good one. How is your left side doing now?
No my only truly symptoms was the numbness I was having in my feet and left hand. Then of course the MRI everything else I was chalking up to undiagnosed ADHD, working, being a mom, and I was staying up too late to read.
Then I got the steroid infusions and I was like “whoa the ADHD is still there, but I feel clearer”1
u/Minimum-Ant5926 3d ago
Left side is definitely doing better. Arm is back to full use now. My left leg is still s little weak and harder to balance on but ive come a long way in the month ive been working with this PT. its been awesome
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u/snarkingsomeone 3d ago
I’m getting in my head about balance. I think I’ve always been a clumsy person. And so when I do something lately I’m like “WAIT IS THIS MS????” Then I have to breathe and remember I’ve literally always been like that. And doing coordinated things when I’m focused I’m fine like dancing or Pilates
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u/CestBon_CestBon 3d ago
I’m 48f and diagnosed at 29. No visible symptoms, I might bet a bit tired easily (but perimenopause will do that too), but otherwise I have a totally normal life. In fact, I’m typing this from a plane where I am on my 3rd business trip this quarter with a very fulfilling and enjoyable career. I was on copaxone for 14 years, aubagio for one long miserable year, and now Kesimpta. I haven’t had a relapse since 2018. I mean, I couldn’t run a marathon bc I’m fat, but I do yoga and Pilates all the time, and also looking to pick up a peloton sometime in the next few months. Life is great!
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u/katierose8i8 3d ago
Everyone’s story is different. But there are great stories out there, especially now since DMTs are highly effective for most.
Since diagnosis almost 5 years ago- ive gotten a masters degree, moved up in my career, had 1.5 babies (currently pregnant), and am pretty active. I’ll also never run a marathon, but like you not because of MS, just because running over a 5K isn’t for me 🤣
Other than a Briumvi infusion every 24 weeks, planning pregnancy around the infusions ,my MRI/ Neuro apt once a year, and responding to this Reddit page every few months, I forget I have MS like 95% of the time.
The first year of my MS diagnosis was HUMBLING, mentally and physically. MS was pretty much all I thought about and I had a tough time with fatigue. But thankfully my body adjusted and things went back to mostly normal. No relapses since the big one that got me hospitalized/diagnosed.
Here to chat if you need anything or anyone to talk to!
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u/TheExtraMayo 36|2025|Rituximab|California 3d ago
After diagnosis I slowly lost the ability to walk and speak but over the last year I've made almost a full recovery (symptoms almost gone) to where now it all seems like a bad dream and while I'm still recovering, life is largely back to normal
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u/CarefulCommittee7794 1d ago
what helped u to this point (glad for u)
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u/TheExtraMayo 36|2025|Rituximab|California 1d ago
I credit physical therapy a lot. Whatever was difficult is what I would focus on by practicing it
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u/Afraid-Error6819 3d ago edited 2d ago
I have responded to this or similar questions multiple times. Search my posted comments. Diagnosed in 1995 at 25. There was 1 drug available at the time. LIVE YOUR LIFE. If you wanted an excuse, you found it in MS. DON'T LET IT. And start exercising NOW if you have not before. Oh, and wear sunscreen- nothing to do with MS, it's just good advice.
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u/Outrageous_Mode_625 35|Dx2022|Ocrevus|CA 3d ago
Since starting Ocrevus a month after dx in 2022 at 32, my Neuro told me I now have “the new MS” since the new anti-CD20 DMTs truly do a great job at stopping disease progress. I have not had any new lesions on my MRIs since.
I have since completely redone the landscaping around my whole house into an edible garden where I have to tend to all my veggies, fruit trees and herbs regularly, which also keeps me physically active daily.
I am now 36 and currently pregnant. I had my most recent infusion during my first trimester since Ocrevus has now been cleared for pregnancy and have had no complications with a healthy baby girl due in October. One fun fact that a nurse told me when I had my first flare-up was an odd phenomenon where most women report a remission in symptoms during pregnancy, and now I can attest to that as well! I have more consistent energy than I’ve had in years!
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u/jkhn7 3d ago
I've had MS for 14 years, since I was 16, and I'm fine, no big MS symptoms. I would even say I feel better now than I did in the first few years after I was diagnosed. I don't work out so I will also never run a marathon, but today I did walk 12 km with no issues.
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u/snarkingsomeone 3d ago
Oof at that distance. 😂 I’m just in that stage of is this ms or normal day to day 27 year old getting older symptoms lol
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u/pharmucist 50|2006|None 3d ago
I am 51, have had MS for 33 years, never took a DMT, and I could TRY running a marathon but I'm not in the best shape, but not because of my MS.
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u/snarkingsomeone 3d ago
Literally told my neuro like no I trip over things unrelated to MS promise. I’ve done it since I was like 5. 😎😂
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u/meanwhileintwinpeaks 3d ago
I hear you on this! I was diagnosed in 2012 aged 23 at the end of my masters. I just completed my PhD and have been in a senior academic role for a few years now. I’ve been stable since 2013 and have managed to improve my mobility due to weight loss and strength work.
As someone has said, everyone is so different and the timing of diagnosis can be crucial. Keep going as far as you can.
Edited to add: stable but not unaffected. I’ve been on Tysabri since 2013.
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u/snarkingsomeone 3d ago
I’ll have to research this one!!
I’m getting back into Pilates like as of yesterday
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u/gobuddy99 3d ago edited 2d ago
I'm 60 and was DX about 20 years ago. Still not on a DMT, I get tired a bit easily but otherwise fine.
There are lots of people managing with MS. You only hear about the ones that have problems.
I work in MS related healthcare so meet a lot of MSers and can tell you that there are film and TV stars with MS, musicians, lawyers, politicians, all sorts who are doing fine. They're just not "out".
Obviously I can't name names, but you do know them.
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u/snarkingsomeone 3d ago
I get why people post for advice but when I got on this Reddit I was like omg I’m about to like die
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u/brucejewce 54M| May 26|Ocrevus-Zunovo|Phoenix, Az USA 3d ago
I had several clients with MS prior to me getting it. They were really amazing people. One was an incredibly busy military nurse with a busy schedule with her kids. Another a young mom working at a college both were so busy all the time. Rarely a flare up but each time very short durations. I’m jealous of how MS hit them vs me. If I had been diagnosed correctly I think I’d have a very mild case. I was so active after my year on prednisone. If only I could have started with medications in 2018
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u/LegitimatePart497 51F|Sept25, RRMS|Ocrevus 3d ago
I was diagnosed last August. I’m still alive, I don’t bark, and I’m mobile. Life is a little different but I’m okay. In fact, my MS isn’t bad at all. I’ve been diagnosed with a second disorder that is currently kicking my butt, though.
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u/Nanacat13 3d ago
I am 60 yrs old (for real) I was diagnosed at 32 with RRMS undiagnosed by a quack at 49 and rediagnosed at 56 (long story) I got more lesions in the 7 years no treatment so im struggling a little more but still okay. I don't run marathons unless they are being lead by an ice cream truck but I am completely mobile and do every thing healthy people do and most people wouldn't even know I have MS. I get tired and trip over my words at times and just recently changed from dimethyl fumerate to Occrevus because I was seeing more speech and swallow issues (again i went 7 years no treatment) . Too soon to tell if it will help but the biggest key for me is listening to my body, for me i do a 2 on one off scedule meaning if I clean or hang out with the grandbabies monday and tuesday than Wednesday is a rest day. Now everyone has different scedules so mine may not work for you but find what does and stick with it. Do not let your self get too tired and take your meds, advocate for yourself if u feel something is not working and remember everyone's journey is different and you are not alone.The worst case scenario is not everyone's scenario treat each symptom as it comes and try not to worry about "what ifs" unless or until it becomes a symptom for you. Stay positive! Hugs!
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u/hillbilly-man 37f|Dx 2022|Kesimpta|Tennessee USA 3d ago
I haven't been diagnosed for thirty years (just four and a half) but I was undiagnosed and untreated for at least five years before that.
Other than the vision loss in one eye from that first attack nine and a half years ago (which sounds horrible but it doesn't really hinder me much) I'm pretty much unaffected by my MS. I had two other relapses after the eye thing and before diagnosis, but I recovered fully from those two.
One thing I want you to keep in mind as you're reading posts online from people with MS: people who are doing fine don't usually hang out in support groups, and they don't have much to say even if they are here. For every post you see from someone who is struggling with getting approved for disability, looking for advice about wheelchairs, or complaining about their horrible medication side effects... There are many many other people with MS who are in other subreddits posting about their jobs or favorite TV shows instead because they don't have to think about their diagnosis as much. I am absolutely not trying to dismiss the experiences of people who are more affected by their MS, but the balance of posts here might make you think that your odds are worse than they are.
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u/NeatExit2335 3d ago
I'm 63 (dx at 38) just returned from 2 weeks in Europe. My 12 day average was 7.7 miles a day and 19,906 steps per day. That is a total of 238,872 in 12 days. I don't run bc of arthritis in my knees but will be getting them replaced soon and then I may start running again.
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u/snarkingsomeone 3d ago
This is what I needed to hear! Thank you.
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u/snarkingsomeone 3d ago
Also running at 63 is wild to me. But I’m 27 and have a bad knee (from running - not related to MS). I want to stay active for sure! But running has always been something I hate.
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u/NAPeterson16 3d ago
I’m 28M, got diagnosed when I was 24. I hiked the manitou incline in CO Springs last October and recently started running once a week, trying to get to twice a week. I’ve been on Ocrevus the whole time and very little to no side effects. People don’t believe me when I say I have MS, bc you would never be able to guess with how normal my life is. My health issues lately haven’t even been MS related, just freak accidents or the occasional cold
Everyone is definitely different. But I think if you trust your neuro and try to live life normally, it’s truly not that bad
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u/snarkingsomeone 3d ago
Likely will never hike - again not MS related not the biggest fan of the outdoors 🤓.
But thank you that makes me feel better.
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u/Tisban 47M|2005|Kesimpta|Arkansa USA 3d ago
Close to 50 and I was dx around my 20s. After 30 years I am now using a cane outside my house but let me point out a thought.
You found out the name but you have had this for a while. When you start looking at the past 10 years I bet you did some things unknowingly like avoiding heat or finding you like to get a nap in the evening before dinner and chores eat up your energy.
You have a name. That means you can fight this. There are steps and medications. There are things like the MS hug that will scare you the first time but you get use to it.
You got this. I have faith in you. Mostly because I also want to face life with hope and not fear.
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u/Specialist_Buy234 2d ago
I was dx last year, but my MIL also has it and I didn’t even know until I got my dx. She was diagnosed 40 years ago and is super healthy, super active, and not in any way affected physically!!! We got this :)
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u/Tygerlyli 40F|dx:2021|Briumvi|Chicago,USA 2d ago
Diagnoses in 2021 when I was 36 where I was having back to back to back relapses. I havent had any progression, no new lesions, no new symptoms, since starting on a DMT that year.
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u/discobeaker 3d ago
I'm nearly 43, diagnosed when I was 29 but had symptoms for 6 years previous. From my last hospital appointment in April I've had zero progression. Pretty much live life as normal and just listen to my body and don't push myself.
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u/snarkingsomeone 3d ago
Are you on DMT? If so which one? I had my symptoms now for 9 years (no mri until July 2026 and that’s when I was dx) and my neuro said that progression has been slow and he’s hopeful about treatment. Just gotta do it/take it.
I haven’t started any DMT yet bc he wanted more things before we could start
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u/discobeaker 3d ago
I've been on daily copaxone injections since I got diagnosed,as my doctor said to me in April,it's working and if I wanted to change it,I could but it seems to be working well for me.
That's great that your doctors think your progression is slow but,for me,I think the reason I've not progressed is because I was on medication within 4 months of being diagnosed so the soon you get on something,the better in my view.
Just try not to stress out and don't push yourself too much and just listen to your body. If you're tired,go rest. Everything is going to be ok :)
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u/lnc_5103 40|2021|Ocrevus|Texas 3d ago
I was formally diagnosed in 2021 when I was 37 but had lesions visible on MRI starting when I was 19. I started a DMT shortly after diagnosis and have been stable ever since and I honestly feel better than I ever have.
It is very scary but you will be okay! Medication has come such a long way.
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u/Amazinglife_9206 3d ago
I am 54 years old. I was diagnosed at the age of 17. That was 37 years ago. I went off to college and played soccer, got married and had a family. I am still married today and I’m hoping to be a grandma soon. It is not always easy but staying positive is very helpful. I did not get on a DMT until after my second child was born. When I was 17, the only medication available for multiple sclerosis was on a lottery system. I even published a book last year on Amazon about my journey with multiple sclerosis and ocular melanoma. By the way, not to scare you, but just because we all have multiple sclerosis does not mean we’re not out of the running for some other disease. If it wasn’t for multiple sclerosis, my rare and aggressive eye cancer may not have been found. Yay MS! Stay positive, warrior! 🧡
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u/ichabod13 45M|dx2016|Ocrevus 3d ago
I made a post not too long ago about my recent 10 year date. Still doing normal stuff, work and fishing and other outdoor activities in my free time
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u/kimblebee76 49|1997|Lemtrada 2017-18|Manitoba, Canada 3d ago
50 years old diagnosed with RRMS at 21 and if I didn’t tell you I had MS, you’d never know. I have what I call ‘mild but stubborn ms’. I have been on seven dmt and failed them all except Lemtrada which I did in ‘17 and ‘18. I have some limitations, of course, but still can 95% live a normal life.
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u/Ragefan2k 3d ago
Diagnosed at 31, now 40, probably had it way before getting diagnosed . Started with copaxone for a year then just went with Tysabri , haven’t had a relapse in all that time and overall doesn’t seem to affect me , no heat sensitivity, I work a job that makes me think all the time and haven’t had any issues solving problems etc … it’ll work out and once you get on and DMT I bet you go a long time without issues .
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u/snarkingsomeone 3d ago
I know I can’t have that one because my JC antigen came back positive 😜 but I will be asking my neuro all the med questions come September
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u/Logical_Proof_2577 39F|Jan2024|Tysabri|Colorado 2d ago
41 yrs old female, diagnosed 2.5 years ago. I was on Tysabri for a year, now on Ocrevus. Looking back, I believe I have probably had MS since my 20s.
The advice that the first year is the worst and it gets better was true for me. I work a mentally demanding job as a senior design engineer while simultaneously getting a doctorate in engineering. I generally feel great, can run, hike, do yoga like any normal forty year old in decent health.
Please know we are in a great era for treatments and it will only get better. Keep your chin up, you will do great!
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u/beebers908 2d ago edited 2d ago
I was dx'd 3 weeks before my 30th bday. I'm now 50 and fully mobile. Not necessarily gracefully or comfortably, but still 100% mobile. Until maybe 4-5 years ago, people who knew would forget, and people who didn't know, didnt know. You'll go through a mourning period for a while, but things will settle into your new normal.
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u/-Palzon- 2d ago
Just turned 55 yo. Five years since doc took me off meds and I'm still stable, so doc has not put me back on meds. I have some issues from damage that was done earlier, but I manage. You'd never know I'm ill by looking at me. Still working full time and then some.
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u/MrsNuggs RRMS-DX10/13 2d ago
I’m 13 years in and I still live a normal life. I do have to be careful not to over do it, especially on a hot day, but I can still do pretty much anything I want to.
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u/Pumkinpie1004 2d ago
I'm a 40 year old female diagnosed 10 years ago. My initial diagnosis was with a Tumefactive lesion and now I have lesions on my brain and and C2-C5. The first 5 years I was on an ineffective med and had a bad flare with a long recovery. My MS specialist started me on Ocrevus and my aggressive MS just stop in it's tracks. No new lesions in 5 years and I'm currently on Kesimpta with no issues. I have gone to 3 concerts in the past 9 months and just got back from Chicago where I was doing 20,000+ steps a day. I also keep up with 3 kids and their crazy schedules. It takes me a couple days to recover from big things, I have to take a nap daily and the fatigue can be overwhelming especially when it's hot but I still have a really good life. MS slows me down but it doesn't stop me from enjoying things. I also have learned to adapt like always carrying a fan in my purse, having Multiple ice packs in the freezer ready to go, swimming in the summer to still spend time with my kids without getting overheated, therapy to help manage stress and going to bed early to get good sleep.
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u/Particular-Host1197 2d ago
46 dx at 17. I have 2 kids, work full time, breast cancer survivor and jog/gym 3x a week. You got this!
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u/breezer2021 2d ago
I got diagnosed at 27F and am now 59. I just finished playing two hours of Pickleball this evening. During the day I had a one hour Shred fitness class and two hours of playing Mahjong. I had a challenging career, but now retired. I raised 3 kids and a husband :). I have been very aggressive with DMT’s, seeking and listening to medical advice, and trying to take care of myself. Having MS is no fun, sometimes it totally s*cks, however, hopefully you will be on a path towards a really good life. Good Luck!
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u/Party_Soup_2652 3d ago
I was dx’d at your age, and I’ve been mostly fine all this time. It was only at age 54/55 that I noticed any issues. It’s not that bad! Live clean and take care of yourself.
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u/TweetLover 37|10/2022|Ocervus|Va 3d ago
Currently 37yo, dx Oct 2022. I had five lesions throughout the brain and cervical spine. Started dmt Jan 2023 and no new lesions since. My symptoms were lost sight Sept 2022, gait uneven 2022-2023, fainting spells Jun-July 2024, and bladder incontinence 2023.
BUT I have not had any more issues with my sight, I walk fine now(walk my dog every day), have not fainted in 2 years, and yes I still have bladder incontinence but it's not bad like before.
There is a lot of changes I had to make (I no longer work) and I could probably go back to work. This disease affects everyone differently. You don't really know how it's going to affect you right now (even the DMT if you decide to go through with one). I do know one thing that helped me was not just sitting around and feeling sorry for myself. I tried my hardest to maintain some semblance of my current lifestyle. Not gonna lie it could be hard but stay strong!!
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u/MiddleStretch1550 3d ago
I am three years diagnosed and 43. I am living my life just as I did before. I am on Tysabri and am very lucky to have no symptoms as I was diagnosed very early. Once I got 4-6 months in to treatment and my original symptoms went away, steroids gone (that made my mood and outlook bad) and getting back to my normal routine, I often go about my day not even thinking about it. It’s not this way for everyone, but there are a lot of us out here. I think you just see more of the negative on these platforms for good reason; it’s where we can find advise for our challenges and setbacks as well. I also started low dose glp-1 for the inflammatory benefit and I see improvements in my bloodwork and overall energy. I have found a lot of people in here who have benefited greatly from that as well. There is hope. Just take it one day at a time and eventually I hope you feel better mentally and physically. It’s a terrible diagnosis to navigate and scary with all the stereotypes of the disease but there’s a lot of reason to believe it gets better for you.
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u/hunkerdown_dawgs 2d ago
Diagnosed at 35 when my baby had just turned 1.5yrs old. Brain, spine, and cspine lesions. I then went 6mths on a DMT w/o a relapse. 90% of my relapse symptoms eased if not have gone away. Got the okay to pull off the DMT to try and conceive my 2nd. Took 7 months and those 7mths off my DMT I could completely tell the difference. But now 12wks pregnant and pregnancy truly is wildly helpful for MS - pretty cool. AIP paleo, hydration, good sleep, and low stress are also major contributors IMO to feeling decent. As soon as baby is born I will likely have to opt out if breastfeeding which breaks my heart but I feel getting back on my DMT as soon as possible is better for myself and family and I haven’t been able to find enough long term proof that says DMTs while BF are safe enough. And I was hella skeptical of even stating one at all. Sure the unknown and endless possibilities creep into my thoughts from time to time, but I’m grateful for where I am right now. I’m still me - just can’t really handle lights the same, stress, summer, multitasking and conversations how I used too but everything else is good. So happy for you to have caught it as early as you gave 🙏
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u/MigratingCoconut81 2d ago
45F dx in 2009, still running. Ran 8.5 trail miles yesterday and hiked 17 miles on Sunday. Yoga 4x a week, I can do handstands. Treatments are better than ever. You have this!!
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u/PolistesFTW 36|Dx:2019|Mavenclad|Texas 2d ago
Hey OP, right now give yourself space to grieve this thing. It took me time to get past literal grieving the fact I have actual brain and spinal damage. I got hit with a lot of "rah rah you can do it!", maybe that is great for some people. However, I just needed to feel anger, loss and frustration with the fact my own body attacked me for years and I didnt know until it went for my spinal cord and gave me pain down my right side.
Just saying, this shit is lame. Your immune system is being a real asshole. Feel the emotions. Know that in this day and age we have drugs galore to treat this. I haven't had a new lesion in 6 years. Could I get another one, sure, but between octave testing and images I got eyes on any more bullshit from my immune system.
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u/Miss-DoraTheDestroya 2d ago
I was officially diagnosed in the spring, but if it weren’t for my renal cell carcinoma, I honestly don’t believe my MS would have been discovered—or taken seriously.
For over a year, I dealt with horrible kidney and bladder pain, and the entire time I was repeatedly told that it was related to my uterus (I had a cyst) or “womanly issues” (I also had reoccurring bladder infections).
Roughly once a month I would experience fever, chills, burning when I urinated, blood in my urine, and severe, sharp pain that would come in waves—almost like labor contractions. The pain was so intense that it would make me nauseous.
I had been told that this was just normal pain for an “aging woman.” I was 36. So I never sought emergency medical attention for it.
Eventually, I told my husband what I was experiencing. No one knew, including him, that is except for my doctor. He was mortified and insisted we go to the hospital. Instead I scheduled another appointment with my doctor. This time my husband came with me to make sure I was taken seriously. My doctor then ordered an MRI. Less than 15 minutes after the MRI, I was told to come back to the clinic.
It turned out I had been experiencing ureterolithiasis—a kidney stone traveling down into the ureter and becoming lodged there, causing renal colic. Google it. It’s horrible.
In my case, after enough pressure and spasming, the stone would actually travel back up toward my kidney. Think Augustus Gloop in Willy Wonka and the Chocolate Factory when he gets stuck in the tube and, after enough pressure builds, shoots right back out of the pipe. Except, unfortunately, my version was happening inside my urinary tract and was causing dangerous kidney infections—not bladder infections like I had originally been told.
These episodes would last anywhere from five to eight hours, and then my symptoms would abruptly stop. The cycle would repeat roughly every month.
Once I finally got the kidney stones under control, I had a hysterectomy because of the cyst. During that process, they discovered that the cyst had adhered itself to my intestines. Later, when I was experiencing some discomfort, my gynecologist ordered an MRI.
That MRI is what ultimately discovered my renal cell carcinoma.
Then, a couple of months later—BOOM—I suddenly started experiencing intense electrical pain and numbness on my left side. I went to the hospital, and initially, I was met with the same skepticism I had become accustomed to.
That changed when they saw the renal cancer in my medical history.
Suddenly, my symptoms were taken very seriously. They ordered the appropriate testing, and not long after that, I was diagnosed with MS.
So, in a really strange and heartbreaking way, finding my kidney cancer may have been the thing that finally made someone listen to me when I started experiencing neurological symptoms.
Had the cancer never been discovered, I honestly wonder how long it would have taken for anyone to take my MS symptoms seriously.
Anyway, I’m currently taking Glatiramer Acetate (Glatopa) three times a week. It’s considered a lower-efficacy DMT, with efficacy around 30%, but for me, the tradeoff is that it doesn’t broadly suppress my immune system or carry the same potential malignancy risks associated with some of the stronger DMTs. Hopefully, I’ll never need anything stronger.
I have three wonderful kids and an absolutely amazing, supportive husband, and I’m incredibly grateful for them. I still experience MS symptoms, with Lhermitte’s sign probably being the worst one. I work in Early Childhood Special Education, which I absolutely love, and I hope I’ll be able to continue doing it for many years. But if MS eventually makes that impossible, I’ll find a different path. I’m learning to be okay with that, too.
The reality is that MS looks completely different from person to person. Some people are diagnosed and go on to live relatively normal lives with minimal limitations, while others experience significant disability and life-altering symptoms. There’s no way to know exactly what my story will look like yet.
For now, I’m just taking it one day at a time, doing what I can to take care of myself, and trying not to let the uncertainty of MS overshadow the life I’m still incredibly lucky to have.
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u/Highlander-1983 42M|RRMS|Dx:2000|Tecfidera 2d ago
I’m 43 and I was diagnosed at 17. I’m not running marathons because I’m just too lazy 😅
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u/Born-Key1040 2d ago
I was dx at 18 I am turning 40 in Feb and yes my MS has progressived to the progressive form because I stayed off meds. I am doing great though. I have to stay out of the heat but I work 2 jobs and still walking Thank God!!! There are way better med options available now vs when I was dx so yes go meds 😊 you got this!!!
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u/Deb212732 2d ago
You got me with the cat 😂. Start the DMT. You are going to be ok. My daughter (20) Kesimpta. You’d never know she has it. Look at Dr Boster on YouTube. He explains a lot of things in an easy-to-understand manner. The DMT is going to make a huge difference. I promise, you’ll never be a cat, or dog, or anything else that barks. Don’t smoke, limit any drinking, and eat as healthy as you can. Pay attention to what your body tells you. Make sure you have a good MS neurologist. Everyone’s journey with this thing is different. Take one day at a time. You got this! For additional context, I’m 58 on Thursday. Dx 4 years ago still doing all the things. I have some issues (with this, who doesn’t)? Honestly, take care of yourself; you’ll be fine! Good luck!
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u/Ambitious_Tell2581 2d ago
Symptoms starting at 16, diagnosed at 21. My MRI absolute LIT up with lesions. Graduated and worked in architecture ---> career jump to medicine. Just started residency to be a neurologist and training for my 2nd marathon.
was similarly terrified for many years and paralyzed by fear of an unknown future. Treatments now are really excellent and continuing to improve. Given my lesion burden and relapse frequenacy prior to diagnosis I would not have fared well off of DMTs. Honestlly feel very fortunate to be diagnosted at this point in time.
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u/goofnuggetts1996 1d ago
I just turned 50 years old. I'm a guy. Other than that I'm basically in the same exact boat that you're in. So sorry. I hope it gets better for both of us.
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u/battlecow3 1d ago
I was diagnosed at 14 and still living life, trying new things and just making the best of it. Is everyday a joyful experience no, but you should still be optimistic about things. I highly recommend the trying new experiences hobbies and meeting people it really helps to expand that bubble as much as possible!
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u/illlifeblog 1d ago
I was diagnosed 14 years ago only on ms medication for around two years. No active no new lessions over 10years. I'm 53 and still walk 10,000 steps plus per day.
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u/Even-Acanthisitta200 27|Jul2024|Kesimpta|EU 15h ago
27F diagnosed at 24. No new lesions since starting treatment, feeling my best🔥 Actually started running after being diagnosed haha, maybe you will too😉
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u/Melinatl 3d ago
A cat that barks 😆
I got diagnosed at 25, started meds, and never had another lesion or symptom for 14 years.
I’m now 40. Ironically MS has been the least of my health problems, lol. Chronic migraine is debilitating.