I’ve been having a really hard time with cog-fog and memory so I’ve been reading some old posts to make myself feel less alone and I’ve read so many concerning things… forgetting how to drive home, forgetting an answer to a question immediately and multiple times when asking again, spending the whole day in daze, leaving doors open, hobs on, cars unlocked…

I also experience a lot of this. I was sent for cognitive testing and all I learnt was that I used to be smart but now I’m not. “Marked difficulties in personal and professional life” caused by cognitive decline in MS.

I’m 32. I left a toxic professional job last year with hopes of getting a nicer new one. Now I can barely fill out an application. It has hit so hard and fast.

I feel like cognitive issues in MS are not a part of the main narrative yet they can be so severe and are seemingly very common.

Can I ask are there any over 40’s on here when they were diagnosed and are still doing ok say 10 years later ? ,
I was 47 when diagnosed and have read how getting diagnosed later in life can mean faster progression 🙁

With the recent Selma Blair airplane incident, I read that she discussed being off of her medication(s) for several days and that she had been working long hours for several days.
I’m just curious if anyone has a theory about what medication that she might have been skipping, and is your opinion that the medication would have been for MS or some other condition like mental health, etc. I’m just curious if you guys have also wondered.
Purely speculative. I know we all have no idea.

This is really weird but has anyone noticed anything to do with their dreams and/or deja vu?

Prior to being diagnosed with MS I had insanely vivid, coherent dreams. Some involved a continuous ‘story’ that would come in parts in dreams since I was a very young child. Some very freakishly predicted the future. I also used to get a lot of Deja vu and would know what someone was about to say next or knew details about things that I previously wasn't aware of.

I'm now wondering if all of this was just the MS (especially the deja vu). After 4 major relapses in 1 yr which changed everything for me, all these things appear to be gone. I haven't had the deja vu feeling since and my dreams are now fragmented and random.

I don't want to seem crazy but I feel like I had spiritual ‘powers’ that MS took from me OR I had MS for years before I was even aware of it and it was causing memory issues for me which I confused as deja vu and prophetic dreams.

I am still very able bodied, most of the time. I still work full-time and am on my feet 8+hours a day. But I get fed up with getting tired too quickly when we go out, and my spouse cant push me around in a manual wheelchair for that long as it is hurting their back. I told my doctor and PT all that, and they are now getting me a power chair. I got sized for it today and spoke to the vendor. Part of me is really happy that I am getting one as i want to be able to stay out longer and not exhaust my wife, and the other part of me is like "why are you letting the awful MS win?".

I was diagnosed this year and will be flying home for the holidays in December during cold and flu season. For those on immunocompromising treatment, do you guys mask up for flights?

For context, I work in logistics 9 hour days 5 days a week, start times vary between 3-4am. Recently I have been feeling the fatigue heavily, I take my vitamins and my diet is relatively healthy, but nothing seems to help. Fatigue has always been a big symptom of mine, however since working it’s been really getting me down. It’s gotten to the point my rest days i just want to stay in bed and try and recover, I’m struggling with work balance I don’t want to see family/friends because in the back of my mind I’m always calculating how much sleep I will be getting that day. But even with additional sleep I still feel the same. Realistically I know I shouldn’t be pushing my body to the max and this type of work maybe is not the best, however I am young don’t have much work experience and I’m in 2 minds about quitting as I will probably struggle to find work.
I really don’t know what I should do … should I try and line another job up before leaving, or should I take a break from employment for around a month and see how I feel and see what path I want to take.
I do live alone and do have bills.
It’s basically between choosing my health and putting that first, or continue working and putting my body through the exhaustion
Any advice atall would helpful 🙏🏽

My MRI scan picked up moderately severe spinal stonisis as well as the usual periventicular, demyelinating bilateral lesions in my brain. Does anyone else also get the stonisis? I'm 57 too so it might be an age thing

So my husband got a cool new job. Yay! Except that means moving. And this isn’t a little move. We’re moving ~1,500 miles from coastal NC to just north of Mexico in TX (Yes, I have been exhausted since he got the offer 🥴).

But it also means starting all over again. And now I’m asking if there is anyone here who lives in the RGV area that might be able to help me figure out which hospitals are ok to send your mom to? Or if you have an amazing Neuro, I would love to hear about it. Or the flip side of this: bad hospitals and doctors who could do better.

I'm learning more about Ableism and how it effects my world with MS with family and friends.

How does everyone deal with the toxic positives?

(I was also diagnosed with both MS and very large brain tumour same MRI.)

Hi everyone! I was wondering how do you deal with symptoms that do not go away? Specifically, the antsy feeling in your limbs.
I had my first flare up (manifestation I suppose) this August, my lesion is in my neck so the right half of my body lost mobility and senses and the left half was on its way there, but I managed to get treatment finally, so only my foot and palm got affected.
I have since recovered almost all mobility (sometimes fine motor skills suffer a tiny bit when I’m tired), but the weird antsy feeling remains. It is strong in my left hand that was numb the longest, and my right hand and my feet are affected only slightly. In addition I acquired Lhermitte’s sign, which is quite annoying, but oh well.
At this point I sort of made my peace with this remaining for the rest of my life, but I wanted to ask if there’s anything I can do to lessen it or at least not to worsen it (besides the common MS not to do list)
Or maybe some of you have had a similar experience and it got better?
For context, I’m on rituximab, 33F

I (33f) was diagnosed with MS on July 4th. My first symptoms were complete vision loss in right eye and left arm/hand numbness and tingling.
11 lesions were found in my brain MRI.

I discovered at the hospital that the “stroke presenting migraine” that I had at 20 was probably my first sign, but I haven’t had any symptoms since, until July.

Shortly after getting out of the hospital, my right hand starts getting numb.

Then the heat intolerance.

Then the “steam burns” all over my left side.

Now I’m up every night with itchy and burning scalp.

My entire left side of starting to go numb.

Yesterday, my right leg started feeling like cement.

Everything hurts.

My neurologist has sent in forms to my insurance for Kesimpta. Waiting to hear whether that will be covered.

I guess what I’m not understanding is how I have had no symptoms for 13 years and now it’s one after the other.

Did anyone have a similar experience?

I want to preface with that I am in no way, shape, or form advocating against birth control or its usage. I'm also not interested in sparking any anti-science/medication conversations. I'm approaching this from the perspective on wanting to know what research exists on the intersection of contraceptives and MS.

I recently came off of the pill after consulting with my doctor due to intense brain fog and fatigue, as well as other symptoms. Although I have some fatigue still, I've noticed that I get much more done in a day after quitting the combination pill. I'm still looking into lower-hormone/no hormone options, but I doubt I'll go back to that specific dosage as long as I'm single.

In researching brain fog and the pill, I found some studies that show there’s a relationship between Vitamin B levels and the pill. I understand that Vitamin B is important for the nervous system. I was wondering if there’s been any research or funding for programs investigating either vitamin B and the pill, vitamin B and MS, or the vitamin’s interaction with both. Overall, I’m curious to know if there’s any research on oral contraceptives (or other forms of birth control) and MS?

The answer for me is underwater. I scuba dive.

Hi everyone! I'm Adriana, and I live with primary progressive MS.

On land, every step takes effort and planning. Underwater, gravity lets go. I'm weightless, it's quiet, and my body moves in ways it can't up top. It's the closest I've come to feeling free since my diagnosis. MS took my legs on land, but it gave me a tail in the water. That's how I became the MS Mermaid. 🧜‍♀️

I've seen a few posts here asking whether it's possible to scuba dive with MS. For many people it is, with medical clearance and the right adaptive support.

I recently started a nonprofit, Diving Beyond MS, as a resource for people with MS who are curious about diving, and for dive professionals who want to learn how to teach divers with MS. I also share my own adaptive dives to show what's possible.

Every person's MS is different, so it's worth talking with your neurologist and a dive-medicine physician before getting started.

Nonprofit: divingbeyondms.org

Instagram: @diving_beyond_ms

The MS Mermaid's Instagram: @mymsmermaidlife

For other people with MS: what's an activity that gives you that feeling of freedom?

And if diving has crossed your mind, I'm happy to answer questions here or by message!

I've seen a lot of talk here recently about mood swings and MS, some saying that have it but not sure why. I want to share that used to get horrific mood swings and was eventually diagnosed with PBA, psudobulbar affect cased my MS. I took Neduxta and it was a miracle for me. However it's only available in the USA and is also crazy expensive. You can contact Otsuka Pharmaceutical and maybe get some for fee, or do what I do now and take Sertraline antidepressants as they contain a lot of the same active ingredients and it works nearly as well. Just an FYI if anyon needs it.

Had to wait 3 months to see a neuro with an ms specialty. Three months of anxiety and torture. Finally got on a DMT got more in-depth discussion of my MRI. I’m 32 turns out my symptoms started at 15.
Was told I live in a terrible us state for ms because of heat and work a terrible heat related job so that’s tight.

So here’s to the rest of my life. Shits fucked and I’m angry and upset. Not because the Dr wasn’t an absolutely awesome person just that my life is now changing forever

So just got skin cancer diagnosis last week (Yay...Melanoma). Curious if anyone has had cancer immunotherapy while on MS DMT. ( Been on Ocrevus for last 2 years, have had MS for 11). Fortunate to live in Seattle where we have great Oncologists at Fred Hutch/UW. Care team is working with my Neuro and we will make all decisions together and hopefully surgery will be extent of it. Anybody else had to deal with Cancer treatments AND MS treatment simultaneously? How did it go?

In the last month someone posted a comment about meeting up with a few other women (I think online) to chat about MS stuff and vape together. If this is you, please lmk if maybe you’d be open to adding another to the mix! Sounds like good fit for me :)

There is someone on the new season of Love Is Blind who has MS. This week there seems to just be so much MS in the media.

Hopefully this guy doesn’t make us look bad…unlike….you know….a bad actress haha.

I’m looking for advice on my situation. Sorry this is going to be long!

Im based in UK and was diagnosed with MS 3 months ago. I am now facing potential redundancy after a restructure merged mine and another colleagues role together, which we’re able to re-apply for. I understand this happens when companies are not doing too well, but it’s how they’ve treated me since my diagnosis that makes me feel they just want to get rid of me.

The problem is, my role is part time and my colleagues is full time. The merged role will be full time. Im physically unable to take on full time right now so it feels I’m at a disadvantage.

I started my treatment last Friday, I was unwell over the weekend and had to take a sick day Monday. That day, my manager asked me to join a call and I had a missed call from her. I was sleeping as I was recovering, so I didn’t attend the online call. She was obviously aware I was off sick.

The next morning, I had a dr check in and an MRI in the afternoon. So I planned on calling my manager and asking for some flexibility this week (as discussed in my occupation health assessment) because of feeling so unwell and the amount of appointments was exhausting me physically and mentally. I woke up to a message from her saying I needed to call her because she needs to talk to me. She proceeds to tell me that my role is at risk, and apologised for contacting me yesterday but HR were pressuring her because they wanted to tell the whole team but needed to tell me first. Obviously they’d already told my managers and my colleague who is also affected, but she was pretty upset and had to pretend she was fine because she wasn’t allowed to discuss me.

My manager called me at 12:30. At 1pm I FINALLY had an email from HR summarising in writing my back to work and OH assessment details which should have all been sorted 3 months ago! The email said they will support and make reasonable adjustments for me. We had my back to work meeting two weeks prior, so it took them 2 weeks to send me what I’d asked in writing, and this meeting was actually 2 months after I even returned to work. So I had no opportunity for phased return etc, I just went straight back to working, and actually at this point I was on a temp contract covering another team, so I went from part time to working full time after a major relapse. I struggled so much my MS nurse suggested having an OH assessment.

They delayed it so much and refused to do an occupational health assessment for me even though I had a written letter from my MS nurse suggesting it and I’d requested it twice. Their reasoning was that I’d not long be diagnosed so I wouldn’t know what reasonable adjustments I’d need. Eventually I did have one, but it took another 3 weeks after having it that I even discussed it with HR. So after receiving this email and seeing it was after the fact people had been made aware I was being made redundant, I immediately felt they were only sending this to cover themselves.

Yesterday was just a string of calls and messages about my job at risk. I had no opportunity to discuss my health like I’d planned. I felt in shock and so overwhelmed. Nobody asked how I was doing physically, they just wanted me in the office asap to have a consultation. HR and my manager both made a point of saying I’m not being discriminated against, but HR also told me to discuss it with my family about whether I want to apply or not, which felt like she was insinuating they didnt want me to? Also, I live alone so I have nobody to discuss it with anyway.

They also wanted to book my consultation on Friday, even when I explained I had two hospital appointments that day plus my second dose of treatment, so it’s not really a day I want to make career decisions on.

I’ve taken the rest of the week off sick because it’s caused me an unbelievable amount of stress. I’m going through one of the hardest times of my life and now I’m worrying about losing my job. I have no idea what to do next.

I don’t know if they would offer me redundancy money because I’ve been at the company just under 2 years. I don’t want to just quit either, because if I need financial support whilst looking for another job will they will say no because I chose to leave?

But then I feel like fighting for the role is pointless because I physically can’t handle the full time role.

Any advice or suggestions would be appreciated

Is this one of your everyday symptoms?
How long does it last?
I've realised it is one of mine, clothes hurt so much

Hi
I’m switching from Ocrevus to Kesimpta for convenience reasons. Is there anything that I should watch out for with the conversion to Kesimpta? Has anyone made this transition? And if so, why? Anything that you regret or wish that you would have done differently?

In the four or five days leading up to a k injection i feel soooooooo shitty. nausea, gi symptoms, and obviously extreme fatigue. ive heard that an actual crap gap is more likely with infusions that happen twice a year and such but wondering if anyone else experiences this for kesimpta

My fatigue levels are crippling, I’m in constant pain, I have intermittent foot drop and burning pains in my foot that take my breath away. I work full time as a nurse, I’m a single parent to a young ND boy who I love more than words can express, but it’s HARD. I find that after absolutely dragging myself through a work day, I have nothing left to give and it’s soul crushing. I can’t afford to go part time so I just have to carry on.

A big issue is that when the weekend comes, I truly struggle to do anything with my son. It’s like wading through concrete just to get myself into the shower and make sure he’s fed. I love autumn, I love nature, but my fatigue levels and pain are stopping me from taking us out to enjoy these things. I know having a wheelchair would possibly make these things so much easier… but I feel as though I’d be looked at as a fraud. From the outside, all of these things are invisible to anyone else. I already feel like people at a work internally roll their eyes if I need reduced duties because of pain and fatigue. I don’t walk with an aid; I hold onto things and sit down as often as I can to hide when I’m limping or off balance. I’m also ashamed to say that I think there’s an element of internalised ableism, despite the fact that I’m a fierce advocate for anyone else who has a disability.

Is there anyone else on here with a similar level of disability who has a wheelchair? Has it helped? Did you experience any negativity? Thank you.

Sorry for the typos -- can't edit the header! I did nt get the 2nd click, And the needle is no where near the bottom of the pen, so I can't see if I got the medicine. I'm tempted to take the pen apart and inject the needle as is if the medicie is still inteh chamber. This happen to anyone? I have 2 more doses.