Hi all,

Im still fairly new to this desease and was wondering if someone has had similar exoeriences.

I was dx in August and am on Tysabri since. Since a week or so I have developed a strange feeling in both my legs / hips. I fell like I am a little weak on my legs. Strength is still quite normal. I can also walk normal distances it feels. Also, if I walk up a hill I don't have this feeling. If I'm exercising also not really.

2 days ago I did some exercise and the next day that feeling disappeared for a few hours.

I also have pain in my lower back when I do certain movements. Overall, I don't really know if this is MS related or something else.

Maybe someone else had this experience / sensation either related to MS or something else.

When I spoke to my neurologist he didn't didn't seem worried and was sure it's not a flare up.

I got diagnosed this year. I'm struggling a lot to concentrate on studying. Even in getting up from my bed. It's actually insane. I try to study in my bed but I can't fully concentrate either. When I sometimes do with my cell phone, I feel so tired that I leave it and try to sleep, which has never happened to me.

I don't know if I explain myself. Before, I would sacrifice hours of sleep to study (but at that time I abused caffeine) and on vacation to use the phone. I'm failing most of the subjects.

I take medication for the MS, omeprazol, antidepressants and vitamin D but I can’t drink caffeine/energy drinks anymore (told by neurologist since it’s bad for me)

I can take vitamins to study but I think I'm tolerant to them because they no longer give me the effect they used to give me.

My next appointment is in January but I don't know if my neurologist will want to prescribe me medication for fatigue.

I can't feel my hands but I have color change nail polish so I can see when my hands are cold.

What else you got?

Hi all

I’ve been on Ocrevus for nearly 6 months and I feel like crap honestly, it’s been a horrible ride for me with MS medication so I’m looking to try a new one.

I was diagnosed last year in march but as I’m sure many of you here will know, the NHS is ridiculously slow, I haven’t even had the results back from when I first had my original dose of Ocrevus in the summer…

I tried copaxone to start with and it took away too much, leg stiffness, pain and these large horrible bumps all over my legs so I chose to try something a bit stronger and go with Ocrevus.

The infusion was pretty horrible, it makes me jittery and sick, but the worst part is it pushed me heart rate through the roof, it was resting at 110bpm and my normal is 52bpm… obviously that makes me very nervous and anxious.

Since then I’ve felt like crap, I’m constantly tired, my MS hug and numbness is through the roof, I’m getting sick all the time and my mouth is awful, constantly sore and my lips keep trying to split open.

So I’m debating switching to another medication.

I could cope with a lot of these issues honestly, I get the medication is stopping me from becoming fully disabled and taking away more from me, but does anyone get awful heart rates from the Kesimpta?

I’ve heard it’s injected into the muscle and not below then skin and in my head as it’s monthly, perhaps it wouldn’t be such a shock to my system?

I’m just wondering if anyone else had similar issues and made the change? I’m losing faith in the DMT’s at this point as the cure is worse than the disease for me, I don’t want to stop taking them but honestly if I can’t find a nice one I won’t have a choice

It’s been a year since my diagnosis. It’s been hard adjusting to my “new life” not just physically but mentally as well. I thank God for my family and neuro (especially my nurse) they’ve made this transition easy to deal with. One of my lesions have shrunk, ocrevus keeping my symptoms away and Lexapro keeping my mind in a good space. Thank you all for the encouraging threads and open discussions. Have a good Sunday everyone ✨

For this FEHB open enrollment period ending on 12/9/24, I am contemplating switching out of Kaiser and going to FEP BCBS Standard, or FEP BCBS Basic, or GEHA High.

I would like to set myself up at an MS Center with plenty of MS specialists as early as possible in my disease.

I have read other pertinent posts in this subreddit and r/fednews, I have ensured that all candidate providers accept the above insurance plans, I have a spreadsheet going of all the pertinent costs, I have called the insurance plans, and I have even called the Ocrevus co-pay assistance program just in case I get switched to it.

(1) If you have experience with any of the aforementioned FEHB plans, how are the infusion DMT costs covered? I have read some posts that mention difficulties regarding qualifying for co-pay assistance due to having a government insurance and I also saw another post which mentioned that they pay $40 per Ocrevus infusion. Worst case I pay the yearly Out of Pocket Max right?

(2) Should I wait to change until next open enrollment? I think I have enough neurological reserve to wait 1 more year with Kaiser and establish 1 full year of data as an MS Patient on a DMT (Rituximab). My main worry about waiting is the current administration potentially making it difficult next year to change insurances with a pre-existing condition.

The problem is the following: I have to take my 3rd loading dose of Kesimpta in two days, but I think an UTI is about to come up (stinging feeling while peeing, generally feeling unwell). I don’t know if I should or am I allowed to take both at the same time, so I’m lowkey worried. Neurologist usually only answers in 3-5 days, and I don’t know if I can wait that much.

Heck, do I even need to take antibiotics or should I wait for now?

Anyone get low grade fevers everyday? 99-101…..I have had them for two years now. I will get fevers from focusing too hard on something like reading or doing housework. I get fevers from talking on the phone for a long time. Or, fevers when getting ready to go somewhere and it is 70F in the house.

I can’t sweat. All I can feel is cold. I run low grade fevers for two years now. I have one muscle spasm on my right hip back side that hangs out constantly and will get worse with activity. Can’t handle the slightest amount of stress. Etc

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

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!

Edit link https://a.co/d/7NY8uJQ

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.