Those who have had optic neuritis..

It presented with severe double vision and pain. 5 days of IV steroids in the hospital and it's improved. Now 3 weeks later, the pain is still present, and the right eye is just blurry, awful color vision and the neuro said yesterday it has a Relative Afferent Pupillary Defect.

Is this the normal course where it improves then kinda gets worse again? Is it likely to improve any further? The current state of constant dull pain, and blurry vision is really making me concerned. Hoping there's a positive improvement 😩

I finished my first week of mavenclad a few days ago. I felt okay taking it but today I feel kinda nauseous and I think I lost more hair than usual while brushing. For those of you that have experienced side effects, when did they happen? What happened?

Hello, first time poster here, as we all know this is not an easy disease to accept and cope with. It has a mind of it's own and it fluctuates dang near constantly. I was diagnosed this year with RRMS and have started Tysabri infusions. My partner and I are having a difficult time with this and I am looking for perspective or advice. I am trying to have more compassion and empathy for his situation too, which is we are newly married and I have just been diagnosed and our life we imagined and planned is changing drastically. For context, prior to this, he has been supportive, he came with me to my infusions, doc appointments and he's always there to help me and lend a hand or get me an ice pack to cool down. I try not to whine or complain too much about my symptoms but rather state it in a matter of fact way. When he asks me how I am, I cannot fake it and say I am fine but I tell the truth and am completely honest about how I am feeling, good and bad. Lately, he has been feeling exasperated with me because he feels like the only things I talk about are how bad I am feeling, or other stressors in my life. I was also diagnosed with a degenerative bone disorder and I had a tragic close family loss all within 4 months of each other this year. He says when I am in a dark spot that he cannot go there with me because he needs to protect his own mental health and if I am feeling bad he feels he needs to be strong enough for the both of us. This mentality translates to him dismissing my responses when he asks how I am and he changes the subject completely if I mention anything he perceives as negative for example mentioning the pain I am in that day. He shuts me out, I will then repeat myself and he changes the subject again like I didn't say anything at all. It makes me feel like he doesn't care or that this is too much for him. I am trying to be understanding of his situation in this too, I know this is difficult for him in it's own way and he's expressing that right now but I do not feel supported and it this is really making me reevaluate my life ... but then the stress of this makes me exhausted, exacerbates some symptoms and then I get fatigued from it and fall asleep.

Any advice or perspective is appreciated. I am stressed, he is stressed, we're all stressed. How did you and your partners cope with your diagnosis and what are some things that have helped you along the way? Or literally any tips and advice.

Thank you

I just got my first LP yesterday afternoon and I fear I've messed up my recovery. So far after the procedure I stayed an extra hour at the hospital laying flat on my back went home and continued laying on my back as instructed. The problem I'm having now is that I can't lay on my back without getting crazy pain from my neck to shoulders and down my arms. So far only laying on my side with a pillow between my knees works but I'm worried about leaking fluid and prolonging the recovery as I already can't stand for longer than a couple seconds without getting the dreaded headache when I have to get up to go to the washroom. Also side note what would be something easy to eat in bed?

I’m sure we’ve all been told that stress management is super important when having MS, but just curious to see how stress has manifested itself either physically or mentally in anyone.

I get a lot of stress from my job and today I had a migraine so bad that I almost passed out and had to go home early, where I fell asleep for 2 hours. I’m convinced that stress made it worse because my painkillers didn’t work like they normally do.

I saw the neurologist today after having to wait way too long. I am grateful that I was able to see him. He seems like a wonderful neurologist, and very compassionate and caring and educated. My diagnosis was progressive MS. He is going to get me started on Orcevus. Also wants me to go to a Neurological Physical therapy. All those things I am more than willing to commit to.

I am however feeling hopeless and there is a part of me that wants to take out as much of life insurance on myself as possible so the wife and kid can be ok in a event there is a “accident “. I feel as if no matter how hard I work at trying to get better I am going to get worse it’s very defeating . I have had my symptoms for three years and have been fighting since . I cannot return to work and disability won’t kick in till god knows how long ?!?In the meantime i am suppose to stay positive and fight when I am poverty struck and having to rely on the government. I wanna do treatment and physical therapy but how does one pay for it when they barely got two sticks to rub together.I have always been the bread winner and the go getter in the family . Not looking for miracles . I just wanted tovent a little thx for reading this .

what are your symptoms?? Has it worked well for you?

I officially start Kesimpta tomorrow, I'm excited but a little nervous.

I'm looking for advice from others on it about what to expect? Also are there things that made it easier to deal with i.e. meds, food, etc?

I've been told to plan to feel like I have a really bad flu and was toying with stocking up on Gatorade, and soup. Are there other things I should get?

Thanks in advance you all rock!

Wishing a very Happy Diwali to all the amazing MS warriors on this subreddit! I hope this festival of lights brings you strength, hope, and peace.

Let’s celebrate together by sharing our stories, thoughts, or anything else on your mind. Whether it’s about living with MS, dealing with challenges, moments of joy, or the unique experience of being an Indian with MS—this is a space for you.

Let’s support each other and light up each other’s journeys. Happy Diwali, everyone!

I'm just curious to know what everyone eats that has MS..

Hi,

For those that are new to me, I was diagnosed with RRMS in May 2006. I was 26 years old at the time. I am now 44 and currently have an active lesion in my right frontal lobe. That was confirmed by MRI in September 2024. So I had a new NFLs test done on October 9. It has been steadily creeping up since November 2023, but my last test really jumped a lot so they re-ordered it and the turnaround time for results is 35 days so we’re waiting for that. During this time, I got to see a gynaecologist because I was having strange periods way too often and it was starting to be concerning to my family doctor which referred me. So I went to see her and the best course of action she decided and I decided that was for me to have IUD inserted and I wanted it under anaesthesia so while they did that they did my Pap smear and they did a D&C To clean out my uterus while they were there. And they found a polyp and other things so they sent it to pathology. Long story short my six week recheck appointment was rescheduled two weeks earlier so she could tell me that I need a full hysterectomy because there are pre-cancerous cells in my uterus and I need an MRI to see if it has spread and she’s going to be consulting an oncologist/gynecologist at another hospital centre close by. I may have to have my hysterectomy done through them and not through her depending on what the MRI shows and what the oncologist has to say about my results of everything so far. She said hopefully they will be able to remove everything and I will not need chemo or radiation. That remains to be seen/determined.

So that was a kick in the face. I never even expected that, it came out of left field for me. I had asked my gyn last time about a hysterectomy (jokingly but not at the same time), and she was like we should do the iud. I agreed because she agreed to knock me out for it be because of PTSD. Anyway so I never imagined the 8 year investment (that’s how long she said I would be good for with the iud) I put in has turned into a less than 6 month non return, non refund, we need to remove it and take everything around it and your life will change. Like I never really looked into the info about a hysterectomy and the implications and the recovery process to be honest. So while I was joking and asking my doctor for one, where she turned me down and now gaving circumstances change where you have to research it and find out everything. My head could blow up right now. I had to post it somewhere. Thanks for reading. Time for gardening 🍯

I don't know if i should invest in a fedora too. So I can tip my hat at the ladies at the supermarket out of respect 🙏

If anyone has not read her book Speedbumps: Flooring It Through Hollywood, you should.

I read it when I was first diagnosed and it really helped me shift my perception of this disease.

Hey community. It's infusion day. 3rd one with Briumvi (Started in May). I have a ritual now. Walk animal Remake bed with new sheets Cafeteria Breakfast (it's delicious 😋) Wait FOREVER for my name to be called, lol Take meds and nod in and out Post infusion lunch and benadryl nap

What's yours? Nap unfortunately will be interrupted by Halloween festivities with our granddaughter but candy after steroids sounds like a win.

If no one told you today I care about you and I'm glad you're here and you helped me today because your in this community. 🧡🧡

Was diagnosed about 16-17 years ago, had minor symptoms beside the occasional flare that would go back after some cortisone. I am on ocrevus since one and a half year. No flares, no side effects, but oh boy do I feel like deteriorating. My memory is gone, I'm forgetting words or can't make proper sentences at all. I'm extremely fatigued 24/7. Just opening reddit feels "too much", let alone functioning like a normal human being. My legs feel so heavy and I can't walk much, or maybe I could, but it feels like pulling two anchors and I just lack the strength. I feel like within the last year or so, I just turned bedridden. Just lying around, waiting for the day to be over. I don't see me calling the neurologist, or driving over, I don't have any willing muscles in my body. What is happening to me?

I recently caught a cold - and my girlfriend strongly suggests that I take an astragalus supplement to help prevent getting sick. So I looked it up to see if it had any implications with MS. I seem to see two differing answers. One is a precaution to avoid it because of it possibly over-stimulating the immune system - and the other is how it might actually help with Re-myelination. Anyone take this supplement or have conversations with their doctor about it?

https://www.webmd.com/vitamins/ai/ingredientmono-963/astragalus
https://pubmed.ncbi.nlm.nih.gov/33794147/

Hi Everyone, It's been a week since my diagnosis and I'm still very much coming to terms with everything. I spent 4 days in hospital on a steriod drip. Whilst I was in hospital my episodes stopped and the numbness in my right arm and leg went away. I was discharged Sunday and Tuesday the episodes came back (episodes being intense instant cramping and spasms in my right arm and leg simultaneously and pain hitting a 10 lasting around 3-4 minutes) and they mostly seem to be happening at night. The hospital said the steriods would still be in my system for weeks and that episodes aren't uncommon. Is this my new normal? I'm terrified of going to bed.

Okay, I had a conflict with my partner last weekend and cried everyday since it happened. And I know how it is when you’re depressive or sad and WANT so sleep all the time. But now I go to the bed at 08.00pm and sleep like 11-12 hours, wake up and I am still so tired, I brush my teeth and go back to bed to sleep again for 3-4 hours. I am so tired! I can sleep like all the time. Usually I drink 2-3 coffee a day, I didn’t drink any the last days and thought, maybe it’s coffein withdrawal. Or crap gap, tomorrow is my Kesimpta injection day. I read on the internet, a flare up can cause hypersomnia. Whatever it is, it needs to stop! I just wanted to rant about it and ask - did anyone experienced the same and if so, what was the cause for it?

I've gone from sleeping 10-12 hours a night to 4-5 hours of broken, unrestful sleep in the last few days. Body is aching, tight, and I'm wildly frustrated. Uggghh

Treatment worse than disease?

Hi everyone- I was formally diagnosed with RRMS in August of this year, but started treatment with Kesimpta at the end of July. Before starting the DMT, I was doing yoga several times a week, walking to the park a few times a week, and doing freelance projects for $. I needed a 15-60 minute nap in the afternoon, but basically felt like myself. Now I have huge, black, puffy circles under my eyes, rarely have the energy to leave the house, nap for 3 hours a day, and this week I came down with shingles. I don’t have the energy to work anymore. I understand this drug is saving me from worse things down the road, but can’t help but feel it’s kind of ruining my life in the present moment.

Am I the only one who doesn’t love this drug?? Are there other treatment options that are less brutal?

hi! I am new to posting on reddit (instead of just lurking) and new to MS - I was prescribed ocrevus back in sept but my insurance (premera) is still deciding whether or not to approve it.

I am at a well-regarded MS center in Seattle so I think the doctors wouldn't have selected it if they didn't think I would be approved, but I am just feeling anxious since they keep requesting more info every 7-10 business days instead of making a decision. they also didn't approve my MRI for 5 months so maybe this is normal. just wondering if anyone has had their insurance say no, and what your next steps were/what mine should be if that happens. or maybe it always takes a while and I shouldn't be so worried.

really glad I found this subreddit, it's the first time I have not felt alone since I got my diagnosis :')

A bit of back story, I’ve been diagnosed for about a year now and started Ocrevus about 11 months ago. Since starting I’ve had respiratory infections that lead to abscesses in my throat, multiple kidney infections, UTIs and pneumonia. I counted and have been on antibiotics 8 times in 11 months and have been to the ER twice. Prior to Ocrevus I would catch colds/get UTIs probably more frequently than the average person, but nothing to this level (maybe sick 2-3x per year). I’ve tried improving hand hygiene and body hygiene, keep hand sanitizer on me all the time, take vitamin C/immune boosting vitamins, drink plenty of water and all don’t seem to make much of a difference. I’ll add, I’m an RN and work in a hospital so I come in contact with bacteria/viruses probably more than most but prior to Ocrevus I was never sick this much. Has anyone else had this issue? Is it really the Ocrevus or could it also just be increased stress? All I know is I can’t keep getting sick this much. It’s scary and I feel like I just spend my life going to work and recovering from illnesses. Just looking for some advise/insights if anyone has any experience.

Hello community!

My girlfriend(F29) got diagnosed with MS on her birthday back in March, and we're still "fighting" to obtain the treatment. We live in Romania, an European country, but the treatment is not enough for everyone and waiting lists are veeeery long.(1-2 years long)

We are kind of going insane, as we're extremely afraid of a new flare-up.

My questions are:

What is your experience with treatment in other European countries?

Do you know the law around getting treatment in another European country if we are European citizens?

We are starting to think about moving abroad in order to give her better chances to a better life.

Thank you very much for your answers, I have already lost hope we will be able to receive treatment in Romania! :(

Hi! My mom (60 yo) has had MS for about 30 years and is completely wheelchair dependent with no feeling in her lower body. Recently she has been having an issue where she feels like she is having on a bowel movement on the toilet, but when she gets up there is nothing there. She genuinely feels like she is having these large bowel movements but she is not. She has gone to her doctor and they have suggested miralax because she is constipated, but dont have an explanation on why she has the sensation that she is going.. so I thought I would ask reddit. Any insight into this would be great as we are trying to get to the bottom of what we have been calling the phantom sh!ts lol

Wassup! 31year old proud father of 2 and I was diagnosed about a week today. Big smile for my wife and kids but nervous wreck on inside..

My whole right arm has is completely numb and severely weakened. My right leg is pretty much is the same boat… normal on the left side thankfully.

I’ve been healthy all my life and very active, can I expect my hand to come back to some sort of normalcy?

Hope everyone has a great Halloween

Are you taking ED meds without issues or concerns ?

Has anyone who is taking Kasimpta gone camping? I am an avid camper in the summer and am worried about needing to take my dose when camping. I already have to plan camping around my period (it's really bad and painful) so I don't want to have to plan around Kasimpta as well.

My biggest worry is it can be 30+ in the day and then drop to 10 or lower at night. I'm worried this fluctuation would be too much even inside a cooler.

I have to pick between Ocrevus and Kasimpta and man I am struggling. I have no idea why I can't just pick one. I like the timeline of Ocrevus (only 2 times per year), but I don't like the risk of infusion reactions, needing prednisone, risk of cellulitis, or the potential crap gap. I like the idea of Kasimpta, but I don't want to be potentially unwell once a month on top of already having period issues (I've read some people are fine with Kasimpta after loading, some continue to feel unwell the night of and day after), and I have concerns about the delivery, and having to take it camping.

I need a magic genie that can just tell me which one I will react better to (wishful thinking I know) (for extra context, 29F, RRMS).

Thank you in advance for any and all help. Making decisions are the bane of my existence.

Typically, I’m an easy going, 30 something year old gal, who copes by making light with dark humor, and typically, my stubbornness tends to make me more resilient than most, but todays different.

Today marks 4 years with this diagnosis, and I think I haven’t fully wrapped my head entirely around it, and I am finally admitting that I am struggling; mentally & physically.

As the disease progresses and my body starts to show signs of decline, I thought more people I call my “loved ones” would flock to assist in whatever I may be struggling in. Man, was I naive to think that was true. It turns out, even though these people tell you that they love you and want the best for you, they’ll run faster than ever to get away from any of the heaviness of any situation - at least it’s that way in my life. From my parents to partners to friends to coworkers to medical professionals. I feel as I am nothing but a burden to them. Countless relationships have diminished due to this incurable illness.

My day-to-day is survival at its finest. Mobility is a major challenge, my cognitive functioning is a bowl of alphabet soup with half the letters missing, a bladder who loves to cry wolf, and other exciting symptoms all thanks to these lovely myelin beat down seshes. And forget about trying to talk to someone in my circle about how I am doing or how am I handling this. I have absolutely no one that I can turn to, besides my therapist, who I can just speak open and freely to with what is going on in my holy noggin.

And don’t get me wrong, this is not a cry for pity - far from it. To get this out has been therapeutic and I thank you all for those who have took the time to read and care. I truthfully am just looking for new friends who are willing to be a positive supporter in life for me, someone who just gets it, and someone who isn’t going to make me feel as I am a burden.

I pray that serenity and peace become the main characters, as I start out chapter 5 in this journey and I very much look forward to who I will connect with during this time. 🧡

I love Halloween, my kids love Halloween. MS no likey Halloween. My kids want to go trick or treating (of course) and I have been wracking my mind all week of how to make it happen. Anytime after 3 pm I am a puddle of fatigue and migraine and vertigo and double vision and weak numb limbs, and our closest trick or treating neighborhood is not wheelchair friendly...none of the neighborhoods really are, it's New England. They're too young to let loose on their own. My husband took them out last year but he's out of town this year.

How can I make Halloween fun and special for my kids (9 and 5) tomorrow without overdoing it and ending up nonfunctional for several days afterward? Any experience or insight from fellow parents?

Is anyone on a really expensive treatment for example Briumvi or Ocrevus. Obamacare enrollment starts in a couple of days. Trying to figure out the best insurance plan. Also I don’t understand how anyone with ms could vote for Trump. Private insurance won’t take us no matter how much we pay or our state subsidizes us.