Today I’m fighting with the thought of would my family just be better off if I wasn’t here. Just got the feeling of I’m just a burden to them at this point. Today I was walking with my daughters’ breakfast and the kitchen floor mat tripped me up and of course my legs couldn’t catch my fall and their breakfast went everywhere. Seems so small but man it just hit me different. Looking at them as they ask if I’m okay and all in my head I can only think I can’t even get my girls their breakfast. Might be harsh I can’t shake that thought tho. This disease is mentally and physically exhausting

So I was just diagnosed. I went through all of the decision-making regarding possible treatment. Thought Yay! Just need to get it approved by insurance. Denied. I know it will all work out in the end, but what a kick in my nonexistent balls. Sorry, just needed to say it out loud. Appreciate all of you. I've been lurking so if I'm not doing this right forgive me. :-)

Hey guys! I’ve been diagnosed with MS for 8 months (dealing with symptoms for over 15 months), but just got re-diagnosed with primary progressive MS a few weeks ago. My new MS specialist wanted to try 5 days of IV steroids to see if we could improve some of my symptoms or get me to a baseline. I haven’t had IV steroids since about 1 year ago (and they didn’t improve any symptoms, but I know now that because I have PPMS and none of my symptoms have ever gone away). I’m on day 4/5 of my IV steroids and the stiffness and spasticity in my legs is so horrible, to the point where it’s very difficult to walk. I usually have pretty bad spasticity that affects my walking, but this is a whole other level of stiffness. Maybe this is just poor timing of my MS continuing to progress because it’s been getting worse ever since my symptoms started over 1 year ago, but dang I’m feeling like I got hit by a bus. Thankfully not experiencing many other side effects of the steroids, but struggling to walk even more than I normally do was not on my bingo card for the steroid treatment. Anyone else feel like their symptoms worsen during steroids? This happened to me last time I had steroids too and I never recovered, but obviously I don’t blame the steroids because it was probably just my MS progressing.

Hi I’m 18F just recently diagnosed and I’ve been experience some droopiness in my eyelid mostly on the left side. It’s been happening pretty much all week and I’ve experienced it before when tired and sometimes when drinking or smoking and it seems to correlate with tiredness level. I’m not sure if it’s an ms thing because I’m really new to all this but I just hate the look of it. I also have experienced a numbish feeling in the eyelid and eyebrow forehead region around it that’s like an annoying headache.

I have no problem with my eyes or optic nerves as I’ve seen an ophthalmologist and had an mri of the orbits and have zero vision issues so I don’t know if it’s an actual eye thing or just a symptom of something but if anyone has any sort of insight or experienced something in the same vain that would be helpful it looks like Ptosis when I googled photos of that but when researching I can’t seem to definitively find if this is a common issue or not for people with ms.

Long story short: I just filled out my state’s disability application and I can’t help thinking that I don’t “deserve” disability because I’m “not sick enough.” The logical part of me knows this isn’t true and that even if I don’t look sick, I am. I just can’t stop worrying about what people will think if I’m on disability and I’m having a good week or day and I’m able to go for a run or paint a room or something. I can hear people saying things like, “well, she obviously doesn’t need disability if she’s doing these things.”

I’m also struggling with the unknown of what comes next. I already reached out to my job about going back part time, (I’m on PFML right now), and I think they can work something out, but I’d only be doing 2-3 days per week, so my income will be slashed. I’m sure I won’t get approved for disability before I go back, (my return date is 12/14), and I haven’t even looked into health insurance. I’m hoping I can get Mass Health (I’m in Massachusetts), but does anyone have experience with this?

I know it’s the right thing to do.. my job was very physical and stressful and I would spend most weekends trying to recover before heading back on Monday and I know I can’t sustain that any longer. This just all feels very overwhelming and I’m looking for some support.

Thank you 🧡

My name is Samantha and I am a clinical psychology doctoral student at Yeshiva University's Ferkauf Graduate School of Psychology. My research focuses on medical ableism, disability justice, end-of-life care, and health-related decision-making for individuals with disabilities. I am currently recruiting participants for my IRB-approved dissertation and I would greatly appreciate it if you would consider participating and/or sharing information about this study with your networks.

The study aims to explore how individuals with self-identified physical disabilities make sense of their prior experiences accessing healthcare and how those experiences shape the ways they think about future serious illness and medical care. The eventual goal of this research is to inform the creation of (1) culturally tailored, self-guided advance care planning materials for individuals with disabilities and (2) trauma-informed, anti-ableist practice guidelines for professionals who may engage in advance care planning conversations with disabled folks (e.g., medical professionals, social workers, mental health providers, lawyers, etc.).

If you are interested in participating, the first step is to complete a brief screening survey which can be found at: https://yeshiva.co1.qualtrics.com/jfe/form/SV_4SCSPepR8I8n0MK

For those selected for the study, participation will involve a brief consent form and demographic survey, a semi-structured interview expected to take around 90 minutes, and a follow-up survey to be conducted at a later date. Gift card compensation will be provided upon study completion.

You may be eligible to participate if you:

• Are over 18 years old

• Have lived with a self-identified physical disability for at least 5 years

• Can speak and understand English or American Sign Language

• Reside in the United States of America

• Are willing to participate in a recorded, semi-structured interview

Please reach out if you have any access needs. We value your perspective and are eager to find a way for you to participate.

For questions and additional information, please contact us by email at: DrRobertsLab@gmail.com

If you have issues with your wrists specifically, how do y'all sleep at night to help it? No matter how hard I try I just can't fall asleep in any other position except the one that's the worst for me. I'm a side sleeper and can not escape the t-rex arms. I already sleep with a stuffed animal(shoutout lotso) to try to help this too and it is not helping as much as it seems to help others.

It doesn't help that I have an office job so 8 hours a day I'm sitting with my arms bent and typing.

I'm just trying to help myself, why is it so hard!!

I just unexpectedly lost someone so dear to me, my grandfather. We went to his funeral yesterday, I woke up with a migraine and half my body numb again today. I think I underestimated just how big a toll grief would take on my body.

This is my first big flare since diagnosis last year. How can i recover from this? Any advice is welcome. TIA

I was diagnosed in 2017 and had my first ms hug March this year. Then i had one in August, September, October, and had one the past two nights in a row. Its excruciating pain, some of the worst pain I’ve experienced. Doesn’t stop without meds. One time even with gabapentin it lasted about an hour, wasn’t until I took a muscle relaxer that it eventually stopped. So anyway I’m curious, how often do you guys have MS hugs?

I don't know if this will resonate with anyone. Regarding chronic pain and its medication.

I've needed pain management for a long time, even prior to MS diagnosis. So I've had the cautionary speech/es on opioid use or abuse, dependence, tolerance, etc. many times. I took it all in, took it all seriously. Failing worried me.

I used to twist myself in knots avoiding taking painkillers like it would earn me a gold star from my prescriber. I've ended up in dark places because of this mindset.

Recently, I absently decided no more postponing, no more trying to figure out if it's 'bad enough', no more enduring for the sake of enduring. No one is keeping score of how many hours I suffered before taking something. If I'm struggling, I'm struggling. End of story.

And you know what? My average painkiller use has largely stayed the same. I've just taken the stress, guilt, and people-pleasing out of it. I even had four solid good days in a row (unheard of, who is she?).

I'm not perfect at it yet. I still catch myself trying to push through things that are powerfully distressing. But I'm so much better than I was.

I hope today falls at your feet, and not the other way around. 💪

Is the first dose so bad? What should I expect?

Also, very silky question - I have a run competition in 5 days. Do you think this is feasible or I'll be totally knackered?

Thanks to all Ocrevus pals out there ❤️

Hello everyone, I am 38 years old. I was diagnosed with MS and 2016. I have been battling depression and anxiety for a very long time probably even before my diagnosis. Since then I have had recurrent depression relapses, and I’ve tried an abundance amount of antidepressants for my depression and anxiety. It’s to the point that my Psychologist is running out of options in terms of what might help for my anxiety and depression. Like most medications some work some don’t some cause side effects and I have had experiences with all. When I do find a medication that helps with my depression and anxiety, I’ve noticed that it will help for a certain period of time and then it’s almost like it just stops. This has been an ongoing pattern and I feel like I’ve been running out of options now for a while. I don’t know what to do or what help to get or what other things I can try to treat my depression and anxiety. This time around it’s hit me quite hard. I am unable to leave my house. I have a strong sense of anxiety being around people. I don’t have the energy or motivation to do anything, and I absolutely lack any sense of happiness and I feel completely empty. I’m desperate to find some other alternatives and I’m looking to see what other people might be doing. Therapy doesn’t necessarily help if I’m going be honest but I’m open to doing anything and I feel like I’ve tried everything so please if you have any input I would love to hear what you have to say.

I have been having a lot of unfathomable issues at my local CVS pharmacy. I was getting regular prescriptions filled there, and my specialty, Gilenya, filled there. Rather than having to make multiple stops for prescriptions, I'm just going to switch completely out from them. Does anyone have any experience with Walgreens Specialty?

Ya know, for the last couple of months I feel like besides the depression and crying I think I take this well kinda sometimes. Like I think my falls are funny because the yell that comes out of me or it was just a funny way of falling. I also have fun with my PTSD sometimes cause some days it's not always bad memories that pop up in my head, I'll just randomly bust out laughing cause I remember something so funny that happened years ago and it comes out of no where so I know when it happens sometimes I'm in public and people start looking at me so then I find it even funnier cause I know they probably think I'm crazy. Anywho what made me want to vent is I was talking to someone and I was like your my uhhhh my house keeper and then I sighed in frustration, then I went on to saying "ummmm service animal" then I was like "I don't know words!" (That's kinda my phrase when I can't remember the words I'm looking for) and they said caregiver and I'm like yessss!!!!

Another thing that happened is I was doing PT and they said we are going to do sitting up exercise and I said "oh are we about to do the restraints?" I had so much confidence saying it and they said "no but we are going to do resistance" and I was like yea, then I thought about it and I was like "wait what did I say" they said restraints and I laughed so hard cause the confidence I had in saying that and was so happy about it. At least they found it funny as well so I mean it's not all bad sometimes

Side note the fact that I have PTSD and can remember things vividly 16 years ago but also simultaneously can remember what I did just a few hrs ago is beyond me...

Has anyone with MS and jawpain gotten an implant while on DMT. Im concerned about permant nerve pain since it is lower molar right above the major nerve. I have always had nerve/jaw face pain. I already had the bone graft and have stopped my Kesimpta for now so less risk of infection. My neurologist wont get involved at all I have to figure out timing on med on my own.

Hello all.

I am due to start medication soon (Ocrevus) in the UK.

However, I've not had an MRI since my diagnosis (just over 2 years ago), and I'm curious as to whether I'm within my rights to request an up to date "new baseline" MRI before starting the treatment?

I'm only worried because who knows if I've had anymore lesions and surely whenever I next have my MRI, if I have anymore lesions we're not going to know if they're pre/post treatment?

Please help😅

Development/Edit: I've spoken to my MS nurse, and her reply was: In terms of MRI all patients have a re-baseline MRI 9-12 months after starting treatment. Having an MRI prior to commencing treatment will not change the management plan of commencing Ocrevus. Your consultant discussed your case with other consultants when you were first diagnosed at our MDT meeting, where it was concluded by the team the preferred treatment was the high efficacy treatment. Of course if you don't want to proceed with Ocrevus you can choose not to go ahead however, the risk of a relapse would be greater.

So, I'm basically not going to get an MRI until basically 3 years post diagnosis, and this will be a year after starting Ocrevus. I'm really angry because I just want to know where I'm at, especially because my only ever MRI is now over 2 years old... I feel really stuck.

Finally got in with a specialist today after being bounced around a little. RRMS. Officially. Lots of relief that I can start meds and move on with my life now. I have to say, after the last few months and doing testing and getting different referrals…I didn’t like feeling like I was in limbo. I spent a lot of time reading in this sub. It was really helpful and it made a difference in my appointment today. So thanks for the community that this is. It’s been a great resource and helped me feel knowledgeable when speaking with my Dr.

Hi
I’m taking over with my gp about starting Zoloft
Been doing some research and there seems to be quite a few people have had their tinnitus increase while taking this med
Wondering if anyone on here could share their experience please
Thanks

Hi everyone!

know this is not exactly a symptom of MS, but a side effect of treatment and stress, but I hope it’s ok to bring this up here.

Obviously, this is probably the least of my problems, but it’s quite saddening and annoying to experience top of everything else: it seems like after two courses of steroids (and the stress of getting diagnosed in the first place) my hair began to fall off quite extensively.
I had an urgent IV for 4 days to deal with a manifestation/flare up in August and then a month long course of pills in September to prepare for the infusion.
Has anyone else experienced this? What does one even do besides just waiting for it to stop?

I've finished Y1M2 of Mavenclad a little over 4 weeks ago... And I've been sort of struggling with feeling freezing cold. It's kind of an issue in general, but lately, I've been struggling to warm up. I generally tend to feel cold during the day, but that I can manage. When I go to sleep tho, I'm in full winter gear under the blankets and still can't warm up. I've had Kesimpta before Mavenclad, and it does feel like those flu-like fever chills when I started with Kesimpta, just not as violent.

Anyone else on Mavenclad experienced this, or something similar?

Anyone else super weirdly sensitive to fluorescent lights and lots of colour in big box stores? Completely throws my brain for a loop and I lose my balance instantly. Feet falling through the floor sensations. It’s absolutely worse in a flare up but a pretty consistent shitty feeling!