Two days ago, I was in a target with my daughter and started to feel faint. I went to kneel down, grabbing the cart with my left hand to brace and it didn’t work. My hand just went limp and wouldn’t grip, I hit the ground. I got my 3 year old into the car and called my husband, he came to get us and took me to the ER. They gave me a CT, it showed non-descript white spots on my brain. They held me overnight for an MRI and I had a 1.3cm lesion on my brain and a few “scars”. They decided to start me on a 5 day course of steroids after the LP before referring me to the MS Clinic.

I’m 36, two kids. Youngest is 4 months so I’m still postpartum. I can’t decide if getting an MS diagnosis would be good cause I will have the answer so I can treat it or if my life is over.

I keep going between crying and not. My husband is doing his best to stay positive but I can see his eyes are red when he visits me. I want to be here for my kids, I don’t want to miss anything. And I can’t figure out how bad this is. Doctor says it’s totally treatable, MS websites show people in wheel chairs and talk about cognitive decline.

I don’t understand how I got here and I don’t know what to do.

My husband and I have decided that we would like to try for a baby. Unfortunately, I’m 41 so am aware that my chances are much lower than they would have been a few years ago. I’m also aware that it could take a long time to conceive, if successful.

I have emailed my ms team (I’m in the UK) to let them know and ask them what I should do regarding medication etc. I’m currently on Kesimpta. I have a neuro appointment in a few weeks anyway, which is my yearly follow up, but I just wondered what other people’s experience has been. I’m really keen to start trying asap but have heard that they sometimes advise you to wait a few months.

Thanks in advance. 🙂

So I made a joke about getting matching tattoos with one of my best friends a couple months ago and she booked the appointment in 2 weeks. I’m nervous because this is my first tattoo and I’m on Tysabri which kinda wipes out your immune system. I have it scheduled for a a little over a week before my next infusion. Has anyone had any issues getting a tattoo while on a high-efficacy DMT?

So today was very sad for me. My superiors and managers talked to me about how disappointed they are with my recent performance and inability to preform as I used to.

I’m a nurse, or at least I was. Don’t know if I can still be one anymore.

These last 3 months have been such a battle with fatigue, terrible vision, sporadic muscle weakness and extreme heat sensitivity.

I’m so depressed about this because I just graduated last year March and I’m so passionate about nursing.

Don’t really know what I’ll do now.

"These findings support further investigations of the potential anti-inflammatory and neuroprotective properties of GLP-1 receptor agonists..."

https://www.medpagetoday.com/meetingcoverage/ectrims/123593

Hey yall! I have been Diagnosed with MS for about a year now and have been on Kesimpta since. Im about to be married and of course now the question is..how do i prevent any accidental Pregnancies. So i wanted to ask the Ladies maybe what method do yall use? I've been thinking of getting the Copper IUD because not gonna lie im scared of using something with hormones..especially when its time to stop using it. Im just very unsure about what to do so i would appreciate if you guys could tell me some of your experiences. I just turned 22 and i feel like im super lost when it comes to this topic and im just so scared of doing something wrong :')

Today is the day I reached my Medicare Saftey Net (last year it was May). Time to breathe a bit and book in all those extra specialist appointments (if I can even get them).

My Psych cost $16 today!

Hi,

I got diagnosed with MS at the end of August at age 23. I used to be a relatively high performing middle distance athlete but due to a plethora of injuries over the years I’ve not been as active recently.

I’ve been struggling with a hip flexor issue since about March, and upon reflection this was probably the first sign of MS as I’ve read it can affect your hip flexor mobility. I’ve picked up swimming as an alternative form of cardio, but I’d be lying if I said I didn’t just want to be running instead.

I know for a fact that MS shouldn’t completely inhibit my ability to run when you look at athletes like Lina Nielsen. I was wondering if anyone knows any good hip flexor exercises to get my body moving better again?

Thanks!

I was just recently diagnosed with MS. I have yet to meet my neurologist (first appt is in 2 weeks) and start a medication. I've heard that alot of meds are SUPER expensive and its freaking me out. I'm single income...am I going to be able afford this?!

I got diagnosed with ms 3 months ago after i had a pretty bad relapse that left me unabel to walk more than 100m.3 months ago i also got corticosteroids i feel better right now but i still have a weaknes in my legs.Will i ever get better or is it something that will be with me for the rest of my life.

Also how long did you see imrovements after a relapse?

I am (or was) a healthy 23F that did not expect a MS diagnosis ever. It doesn’t run in the family and it has turned my last couple of weeks upside down. It started in september when I thought I had orbital tunnel and then I couldn’t pick up my water bottle , then my leg couldn’t bend. My left side of my face was swelling, my speech was suddenly going out. I felt drunk all the time. After 3 er trips within a week I was diagnosed with somatization disorder and migraines… what a joke. I had 2 CT scans that were clear, so no stroke but I had my entire left side just quit on me in a matter of days. The fatigue.. I can’t even begin to explain. i’ve never been tired like that before… ever. I never felt more defeated by my own body. The only answer I was given was extreme headaches and possibly made up symptoms.

I was told to follow up with a neurologist which led to me finally being scheduled for an MRI this past saturday. After I finished my brain MRI, the tech came in and told me to wait just a couple minutes before leaving as he wanted to get ahold of my neurologist. I knew then this was more serious. The strangest feeling of sitting in a diagnostic clinic waiting for some of the worst news of my life. I was told to go to the ER and I got admitted that same day. I’ve never been poked and prodded like that before in my life. The neurologists assigned to me were amazing but to hear this news at 23 is jarring. I am lost because I don’t want to lose my independence to this. i’m applying to graduate school soon, i’m working, & I have to pay my rent. I have so many other responsibilities and I don’t want this to kill me.

I am at a loss and maybe just not in a space to figure out what this means. I don’t want to feel tired like this all the time. I don’t have infinite sick time. I should be the healthiest and happiest i’ve ever been and in the course of 2 months all has gone to shit.

I’ve been smoking since I was 15, and I had my first MS attack at 19. I’m 23 now, and after being diagnosed with MS this year, I’ve cut down quite a bit, but I still can’t seem to stop myself from smoking around 5–7 heated tobacco sticks a day.

The thing is, I genuinely feel disgusted with myself when I smoke, but it’s become such an ingrained part of my routine. My lifestyle is so stressful that smoking feels like the only way I can relax.

I also know people with MS who smoke or used to smoke, and seeing that makes it difficult for me to fully accept how important it is for me to quit.

I’d really appreciate advice from people who have managed to quit smoking. I think I need either some encouragement from people who’ve been through the same thing or a reality check about how serious this actually is.

Did you notice any difference after quitting? Did you feel like it helped your MS in any way? Did you take any medication to help you quit?

Thank you!

I’m going through a period of immense grief due to a death in the family and I’m so paranoid that my grieving will throw my body into a relapse.

Poor sleep, lots and lots of crying, trying to support other family members…

Is it possible for me to grieve my way into a relapse? Leave it to MSers to ask for tips on how to grieve gently… like we don’t have enough to worry about.

TIA.

Tengo mi mujer que tiene esclerosis múltiple y me gustaría entender ayudarla y todo lo que sea necesario y nose cual carrera elegir si psicológico y luego neuropsicologia o medicina y neurología tengo 40 años soy ingeniero informático y voy a hacer todo lo posible para investigar una solución a ellos ayudadme comunidad

Does anyone find that fatigue ramps up if you're watching or reading something that requires real concentration?

I can watch reality TV, or a game show, or something comedy related without an issue. But put me in front of a crime drama, or something I have to really focus on, and after it's finished I can barely move for the fatigue it causes.

Sorry if there's another post about this, it's probably a really common question

I just got diagnosed and am thinking of going on a stimulant for the severe fatigue. Is there one people recommend? Are there any that you would not recommend?

This might be both uplifting and somber?

As all of us know, MS is/was a life altering event. For me, It was like a bomb dropped on my head.

For the past year, I had no clue I was experiencing the stages of grief. My old life, the future, the changes, denial, anger, sadness.

I started therapy. Finding acceptance, accepting unpredictability (even if i didn’t have MS life is still unpredictable) finding control again, health anxiety.

But one thing I didn’t realize I was dealing with which stupidly opened my eyes is… MS can’t be fixed. I spent months going to doctors, specialists, explaining my symptoms new and old hoping for a „fix”. My whole life when I got sick or injured the doctor fixed it! Now, I finally came to realization this can’t be fixed. The scar is there and it’s here to stay! I found great help in therapy, specifically a therapist who specializes in chronic illness. I didn’t think I needed it at first and would ghost my therapist on countless occasions.

I kept chasing a fix, a cure, a medication that would make this all go away when my whole issue in this process was denial. Realizing this has really helped me sit down and relax that yeah, I have MS. Yeah, it’s here to stay. Yeah, i’m in control of my medication, lifestyle changes, DMT. ETC. But life is uncomfortable, unpredictable, and chaotic. MS or not. Myself and everyone else here haven’t lost themselves in MS.

I hope this might help some people whether early on in their journey, grieving, or just a different perspective on how this disease effects people.

I have my answer and it’s MS. Anxiety is a bitch and there’s nothing left to „fix”.

Edit: I wanted to say that I didn’t deny my MS or thought my dx was incorrect but more so being so anxious that all my symptoms were caused by MS and me struggling to accept that it is what it is.

How often are you guys having to reach out to the MS nursing team? How long does it take for them to respond? Do they respond on weekends?

What types of things can you reach out for? I have uncontrollable shivering fits now because of the cold, that something I should be reaching out for? I’ve told them about it previously. I neurologist should know as I told him I’m a consultation. I was told the only thing they could do for me is give me muscle relaxations but they don’t want to just yet. I’ve not found anything to work.

I have to be careful when trying to warm up to stop the shivering, if I get too warm, I’ll get nerve pain in my skin that feels like I’m being electrocuted in the skin. Extremely painful, indescribable pain. I’m currently taking tramadol 20g twice a day ( I’ve been told this is the max dosage, was taking Gabapenten and pregabalin before but they didn’t work at all. Found tramadol is the only thing that takes the edge off. Although I’m a bit worried to be taking an opioid so young and to be taking it everyday but it’s the only thing that helps).

Hi everyone! I'm from Colombia and have MS. I currently receive Ocrevus (ocrelizumab) every six months.

I'd love to pursue a master's degree abroad, but I'm worried about losing access to my treatment or having to pay for it out of pocket.

Has anyone with MS moved abroad to study and managed to get Ocrevus covered by public healthcare or private insurance?

I'd love to hear about your experiences, especially regarding pre-existing conditions and international student eligibility.

Thank you! ❤️

Been processing this for a little time now, finally ready to join. I've had symptoms for the last 5 years, at one point I couldn't walk or hold a pencil correctly. I was told it was just anxiety, so I took matters into my own and changed my lifestyle for the best (food and outdoor activities). Fast forward to this summer, i got into a car accident and my lawyers ordered MRIs. They found demyelination in my spine, got me to a neurologist and I officially got diagnosed this past month. I thought I had accomplished a lot over the years, thought it was gone. Now I'm on IV steroids, and starting Kesimpta soon (that is a mess with insurance). What does life look like with MS while you're actively on meds? I'm grieving my body and the ignorance I had when thinking I overcame this "anxiety", only to know it was actively flaring up for a while. My numbness was 95% gone, occasionally there with stress, I ran my first 5k, lost 30 lbs naturally, and made huge career strides. I'm just .. idk. Sorry for the loss of words. Also. I'm scared to be married to the meds for the rest of my life the way the job market is.

Earlier this year for my m.r.i I was told they saw some activity they didn't like so they scheduled a second for the year 3 months later. I assumed because we had a toasty summer that was causing usually flare up activity, I knew I was feeling more off then usual. Once I got the second m.r.i I got a phone appointment with nuero and I new that it was bad otherwise I don't hear until follow up at m.s clinic. He tells me new lesions are showing and the one most worrisome is on my brainstem. I have lesions and black holes on brain and have had lesions on spine. My clinic appointment (usually every 6 months was moved up a little. Over the past few weeks my speech has been off, I mess up words or stutter to figure out what to say a lot more. It's happened in past but not to this degree. Every time I sit down I get lightheaded which is really annoying, if anyone else has the same issue with the stem lesions and it caused the sitting and light headed nonsense, have you found anything to help or make it easier?

As I’ve said, being on 20 mg of Lexapro suppressed PBA and everything pretty heavily. Tapering off now I was laughing like crazy last night when my girlfriend came over. Even she said that I’m sounding better and she missed my laugh too. Even if it was excessive or inappropriate at times she said she loves hearing me laugh. I love my laugh too. 😁 spooky Spooktober is awesome 😈😁

15 months ago I got ON which I healed pretty well from, a month or so after I noticed right sided tingling on my thigh, torso, and forearm, which honestly coulda been there because it’s mild but I was so hyper focused on my body I noticed it around that time. That has been on and off the past 15 months sometimes pretty consistent, the thing is I don’t remember a “flare” that caused this, and isn’t that how RRMS works? Wondering if this is more common for PPMS.

Has anyone had success building up stamina? I'm just so tired of the fatigue and how much of my life it takes up

Did anyone else choose a tough career with a lot of visibility before getting their diagnosis? I started my career in HR three years before my diagnosis. Now, two years later, I’m doing well but often experience fatigue and frequent sinus infections. I feel guilty when using my WFH accommodation or using my intermittent FMLA. I’m an HR Business Partner and it feels like everyone has eyes on me and it makes me look flaky or like I don’t care. Plus, I’m a people pleaser, so that doesn’t help either 😅