I have some rare left over funds from fsa this year. Struggling to walk and stand regularly for excersize. Been thinking of walker. Any advice?

*Right side of body/hand is weaker, so straps with buckles is a no go Also smaller is better, you're girl is 5'3. ;) Here is what i'm thinking. https://a.co/d/8omFnJC

Hi! I’ve been struggling with chronic pain for many years and now am finally getting some answers. For those of you who live in the U.S. what is the likely hood of getting disability benefits with MS? I hope this is an ok question to ask here I’m sorry if it isn’t allowed.

Hey friends, just wanted to ask—do yall deal with things like muscle spasms/pain that feel like they center in the chest when you swallow/breathe? Sometimes it happens in the throat for me but I’ve been dealing with ambiguous “chest”/upper torso pain in multiple locations and I realized that it’s definitely around the center when any sort of muscles involve the throat / neck like when swallowing or straining. It’s very annoying and exhausting to deal with.

Hi all-

I'm switching to Mavenclad and have been doing some reading about it.

Does anyone know why/how it's method of action translates to dropping white blood cell numbers to their lowest points a 1-2 months after dosing?

I get that it targets them and understand that it mimics one of the DNA bases but why the delay?

This is particularly curious to me given it's half life in the body is so short...like one day short. I feel like I'm missing something fundamental in my understanding of thus drug.

Anyone have thoughts or can point me to a reference that explains this in not overly technical drug interaction terms?

TIA!

I doubt I'm the only person who struggles to walk with cups of liquid without spilling or splashing. I got this for my birthday Friday and it's awesome! Even if I stumble, no problem!

It's like $20 on Amazon, and they have a bigger one too for plates and bowls if you want! Just thought it'd be a useful thing if someone hadn't seen it!

Hi everyone,

I’m hoping to get some perspective on how MS, particularly fatigue, affects someone’s ability to communicate.

I’ve been dating someone wonderful who has MS. She’s shared openly about her challenges with fatigue and how it affects her energy levels, including her ability to socialize. I completely understand and respect this—it’s one of the things I admire about her, that she’s so honest and self-aware.

She’s also told me that during these draining periods, she tends to get quiet and doesn’t want me to assume it’s personal or reflective of her feelings about me. While I appreciate her openness and trust her words, I still find myself feeling anxious when she’s quiet for several days.

Recently, our communication has slowed significantly. We used to talk daily, but now she’s gone a few days without responding. I know she’s been busy with work and feeling fatigued, and I don’t want to pressure her. Still, I’m trying to navigate this with compassion while also understanding how MS might be affecting her capacity to send even a short message.

For those of you with MS or loved ones who have it, how does fatigue affect your ability to keep up with communication? Even something as simple as replying to a text? I want to support her without making assumptions, and your insights would mean a lot to me.

Thank you in advance for your advice and experiences.

My 36 year old husband is getting his diagnosis right now, awaiting LP and those results.

His MRI brain and c-spine showed lesions on his brain and cspine. We thought he had a pinched nerve and never expected this news.

While we’re in the limbo period for the final diagnosis, I’m trying to get ducks in a row. He has life insurance but idk if I’m able to get him disability insurance now. He has amazing benefits through work, but he is a police officer so I’m trying to plan what I can.

Any insight/advice/recommendations moving forward?

Hello! It’s 6:00 in the A.M. (yes it has been a long night) and I decided to finally download Reddit and ask the people who I think can help me the most: people who actually have MS (mind-blowing I know)

So I’m new to having MS and I’m still in my formative years of understanding myself (I’m F 19), which has made me feel so out of my depth. I thought I was doing fine but I just got myself a numb right foot with no obvious answer for why. (For information, I have just had the two half doses of Okraves about 2-3 weeks ago) I have had added stresses like the holiday season and a busy schedule with my volunteering work, but also the cold of winter/late fall has been difficult.

So I have a few questions I would like to ask to get others perspectives and experiences.

1. Does MS affect thirst? If it isn't MS what could it be? (Thirst has been an incredibly tricky thing for me. I can definitely say that when I stressed or panicky I need water, BUT I am still confused if it should be happen pretty much consistently every night/evening. Right now I am obviously a little stressed from a possible flare up and I feel an insatiable thirst. My pee could be as white as snow and I’d still feel thirsty. And no I don’t have diabetes)

2. I have incredibly cold feet, is it ok to use heat on them? (I had my 2nd episode because of excessive heat on my neck from the heat pack)

3. Is it possible that an MS episode can pause or be halted and then continue from added stress or irritation? (my right side went numb before but only above the chest and arm, but now with colder weather and added stress my right leg and foot have become numb)

4. Is it possible that relaxing or irritating those muscles around my neck may cause more flare-ups? (For as long as I can remember since having MS, my neck, traps, and atlas of my head have been incredibly tight. Although recently they have been worse since having a massage. I've noticed that I get weird and often uncomfortable symptoms from over-massaging my neck, especially my atlas or near my spine. A symptom I’d like to mention is a rush of cold and warm on the top of my head like water after having my atlas massaged. As well as my right numb foot when I had been messing and massaging all of the late evening)

5. I’ve noticed that MS gets way worse with stress (no duh), but how do I know how much stress is too much? (It feels like things that I used to handle fine under pressure are now building up and kinda breaking my brain. In incredibly stressful situations I get a heat flash throughout my body and become a little dizzy.)

Ok that’s all for now, but thank you to anyone who answers! It means the world to me :)

And my hearts out to anyone going though MS with me! I literally would wish this stuff on my worst enemy.

I (17f) got diagnosed with MS 4 months ago and I feel helpless to say the least. I have no idea what's now supposed to be normal and what is not. I often experience numbness and tingling in my limbs. I used to have the sharpest memory but now I'm lucky if I can remember a conversation I had with a friend a few hours ago. Has anyone else struggled with this? I also just finished my second round of Mavenclad pills a few days ago and start physical therapy next week. Advice, experiences, or opinions on any of those?

Hello there... I'm loving get tattooed... I started taking K and I have a question can I get a new tattoo when I'm on K?

I’m not sure if this is an MS thing but bear with me.

I have bipolar 2 and have been experiencing slight mania recently. Today I was sitting in the dark in the living room and the lights in the kitchen kept turning on.

Now the lights are motion activated which logically I know my birds moving around in their cage could trigger it. But still I got scared of Jinns (iykyk) and stared at shadows. Omg they started to move around and get larger. I saw the laundry basket shadow and it seemed to be swaying and then shrinking and growing. Is this like vertigo (or vitiligo?) bone apple tea. Or is it an MS symptom I haven’t experienced yet? Thank u guys so much in advance & sorry for being weird. I am also sleep deprived

Anyone deal with tension headaches daily?

Hi MSers!

I have seen several posts about family member bringing people with viral infection or lung infection to family gathering and it sounds very concerning.

As we have MS and on meds that suppress our immune system, how immunocompromised are we? What can we do? What can we eat? Please educate new comers like myself.

By the way, thank you everyone for last post about MS trigger. I am really grateful :)

Edit: Everybody is different especially with different med but I just wanna know different story. Thank you for all reply!

Hi. With MS almost 2 years. There have been no major life-changing exacerbations, but I am concerned about the constant vibration. Doctors only prescribe new pills that do not help or shrug their shoulders. I wanted to ask if anyone has any techniques, dietary supplements, exercises or rules on how to deal with this?

My brother brought his four year old to dinner sick but chose not to disclose as he didn’t “think she was contagious” and now I am not allowed to be upset since it is only “walking pneumonia” and not a big deal. It seems like it was more important that the family be together than my health. They all know I am immunocompromised but didn’t seem to realize that this applied.

My husband and children are wonderful and supportive and empathetic and everything I could ask for and more…

Yet, I am still sad about this situation and how hard I struggle to just exist sometimes.

I (F,25) have had RRMS for 10+ years and have worked out for most of those years (mostly gym lifting, ran for a little bit, cycling some) and for most of my diagnosis felt “normal”. I was able to push myself in the gym but over the last year or so, I’ve noticed it fatigues me much more than it used to. I have a hard time pushing my lifts in the gym due to excess fatigue but I know pushing to “failure” is how you build muscle. So anyone with MS who is also a gym-goer, how do you workout? Do you push your lifting in the gym, do lighter weights to “maintain” muscle mass, or have you completely cut-out lifting at the gym workouts and do something else? I’ve tried variations of these but they all seem to make me the same level of fatigued and weak.

One of my MS symptoms is a Neurogenic bladder. The bladder retains 100% of the urine. As it fills with urine, instead of expanding as normal bladders do, it contracts, causing pain.

I have treated the problem with intermittent self-catheterization along with a medication that relaxes the bladder; I have used oxybutynin, ditropan, myrbetriq, and gemtesa. All have worked—gemtesa has fewer side effects.

I would prefer going off all prescription drugs. Does anyone know of a natural herb or formula that can be used in place of gemtesa?

Many thanks in advance.

I took up crochet, learned to make a brain, and decided to make one with lesions! It’s certainly not anatomically correct but I figured some in this group would enjoy it.

Picture: https://imgur.com/a/MjqQ1C9

Hello everyone! A year ago I was diagnosed with chronic progressive MS. My decline has been fast and ugly, unfortunately. One of the major problems I have is swollen feet and legs. It's extremely bad and painful. I elevate my feet, wear compression socks, wear things that circulate my blood on my legs, use ice packs, Lasix, etc. Nothing seems to be helping at all. I've also gained almost 100lbs in a year from the steroids. Kesemta didn't help me at all. Does anyone PLEASE have a solution or an idea I could try to get this swelling down? IDK what else to try and they're so swollen they hurt 24/7. I'm at my breaking point. Actually I've been at my breaking point. Thank you for your help and understanding in this situation.

I need help / advice on something.

I’m a 27yr old Norwegian guy that got diagnosed 7yr ago.

My biggest struggle atm is that my feet and hands get cold and sweaty Thanks to the winter cold.

Is there any treatments for this or I’am just out of luck on this one

I'm 27F and got diagnosed with RRMS about 2 years ago. Since my diagnosis my sex life with my girlfriend hasn't changed but over the last month I have struggled to finish if you catch my drift or if even I am turned on and want to have sex I can't seem to get wet. I am so sorry for TMI but I guess my question is how do we navigate this. My initial symptoms were numbness and tingling for pretty much most of my body so I know the nerves in my lower extremities are shot. Thank you in advanced MS bestie 🫶🏻

Right now I'm taking 10mg baclofen 3x a day in an effort to get my hands under control.

It's been 3 weeks since i last managed to wash my hair unassisted and chewbacca is living on both my legs.

Last night I accidentally took 2 baclofen 10mg instead of 1 baclofen and 1 tizanidine and I noticed a big difference. The spasticity and numbness didn't go away completely with 20mg but it made me think if I should call the doctor Monday and request if my dose could go up to 20 or even 30mg a day.

For the people that are on baclofen, what is your daily dose? From what I've read here and there many people are maxed out before it did anything for them.

I’ve been noticing lately I keep turning games down to easier difficulties and some games I just won’t play anymore if they’re a bit stressful (things like XCOM or Elden Ring).

I know life stress causes me issues buts it’s weird that I have to remove game stress lol.

I just wanted to know if I’m alone and what games you can’t go back to anymore.

It’s not necessarily a bad thing as it’s making me explore new games but it’s just a weird thing I’ve noticed.

So am due for my first Ocrevus injection this coming Tuesday. Have to say that O am a bit nervous. One for the potential side effects and two, for it working and stopping my ms progression. Fingers crossed.

I have cataracts and I’ve had two people say they won’t operate on my eyes because I have MS.

Has anyone found a way around this issue?

hii, i'm thinking about what to do with my life and i was wondering about living in another EU country. i know i can't apply for citizenship and i don't inted to. i just thought i can just pay my public health insurance in my home country (czech republic) and somehow exist abroad (and come for my ocrevus every 6 months back home), but my friend who is polish and lives long term in czechia told me that if i want to work abroad i will have to pay their taxes and that could interfere with my czech health insurance. buut if want to live abroad i have to work there - i have my heart set on germany but the prices and wages are next level in comparation to my post-communist country :D do any of you have experience with this? or even where to google those things? i don't think i want to be abroad permanently, i'm just young and wondering what to do if i'm not accepted into my dream phd programme here. i don't want to ask my insurance company now as i very much hate them right now (and i think the dislike is mutual, the suckers didn't want to pay for ANY ms medicine and i wrote a strong-worded e-mail...) (i know in comparation to you in the usa i have nothing to complain about regardung insurance and i hope all american folks here are doing well!! i hope all of you are doing well)

I’m the past three years I have been feeling really nauseous whenever it gets hotter than about 25°c so I was googling today and I think it might be heat intolerance. I typed in causes and apparently it can be caused by MS. Anyone else have this? I do have one question for you guys though can MS show symptoms long before any lesions develop on the brain. I’m asking this because the heat intolerance started about a year before my diagnosis but at the same time as the heat intolerance started I started having really numb hands it was so bad that I got an mri and there was nothing on my brain. My neuro denied that this was related to my MS but now I’m starting to wonder.

I was diagnosed with MS this past Monday, so I'm very new to all of this and still trying to wrap my head around everything. It’s been a tough week with sleep issues worsening my fatigue, impacting my cognitive function and overall ability to cope.

I’m experiencing spasticity primarily in my neck, which also has a knock on effect on my jaw and has caused damage to the joint. It's fairly localised but can be quite disruptive, and I want to get it under control to prevent further strain on my jaw joint. My neurologist thought about prescribing gabapentin, and on the one hand I really want to try it, on the other hand I am feeling a bit hesitant. I’m concerned about potential systemic side effects, and I've read that you have to take it for a while for it to be effective and then it's hard to come off of it. So I feel it's a bit of a commitment, and I'd rather take something you can take as needed, but maybe that's not really possible. In the past I have tried amitriptyline which didn't help, and oxazepam which helped but I needed to increase the dosage fairly often so it was not feasible as a long term strategy. I also tried full spectrum cbd oil and this brought a lot of relief for a few months but stopped working one day 🫠.

I’d really appreciate hearing about your experiences and any tips you might have. How have you managed similar symptoms? Are there specific treatments or strategies that have worked well for you, especially for localised symptoms? Any advice on navigating this new reality would be incredibly helpful.

My wife(32F) was discharged from the hospital yesterday. She went to the emergency room last weekend after having numbness in her upper and lower body, we thought it had to do with back problems she’s had since giving birth in 2022. After spending a couple days waiting for MRIs, we started to hear from the neurologists that they were suspecting MS, and they confirmed the diagnosis from blood tests and spinal fluid. She has 3 lesions in the brain, one which is apparently old.

My wife had had strange blurry vision back in September and some feelings of being off-balance, but it improved and we had chalked it off to some after effects of having Covid in August. Now it seems like that was a separate flare-up, just about 2 months before this one.

She was treated with steroids for 3 days, and the numbness went away. She was desperate to get out of the hospital and so we were so happy to get discharged yesterday. But we’ve been left with very little support and advice. The closest specialist won’t see her until April. We’re trying to get much sooner to a specialist in New York, but of course everyone’s closed for the weekend. So now we’re just sitting in the anxiety of it all. She is having some blurry vision and tingling in the feet when she sits, not sure if these are new symptoms or a continuation of the old ones. Is she getting worse again? Did we quit the steroids too early because we wanted to get home (they said we could do up to 5 injections)?

Any advice, insight or anything really would be really appreciated, we’re feeling scared and alone in all of this and don’t have anyone to help us get our bearings or answer any questions. Thanks

Hi guys, apologies if this question is dumb. I’m getting my first lumbar puncture on Monday and i’m still not sure what i can and can’t do after?

I’ve gathered that you should just lie down the first few days after, but I’m curious about how you guys killed time while having to lay flat on the bed for a few days. Could you have your head propped up by pillows? Were you allowed to read/ do quizzes/ etc? Or were you too poorly to do anything but lay down? I’m really counting on full sugar soda helping me after the procedure lol

Thank you!