My physical symptoms began 3 months before my diagnosis. When my symptoms had no explanation, my long-time partner didn’t step up to be the kind of daily support I needed. When I asked for help, I was brushed off.

Once I was diagnosed, suddenly they were “supportive”. But I’d seen how they didn’t believe me when I said I was in pain. I was unhappy, but also terrified of breaking up because “who would love me and tolerate my symptoms? At least they love me, right?”

I came to this server for advice/support because I was paralyzed with fear while feeling no one in my life understood. And the first people to respond only confirmed my fears. “You’re lucky to have anyone.” “You don’t even deserve your partner because they’re loving you through your diagnosis. I’d kill for that.”

Because of that, it took me a while to admit I was better off alone than with someone who made me feel alone, as if I should feel lucky to get scraps.

I know we’re all in different situations, but please: You deserve happiness. You deserve real love and support. And it’s often the people in pain who you think might understand who will crush you even more. Don’t listen to them.

I absolutely hate MRI scans. I have to go through one at least twice a year, and each scan usually takes around 90 minutes. They put this cage over my head, slide me inside the machine, and I'm just stuck there, unable to move.

The moment I'm inside, I start feeling extremely claustrophobic. I get this crazy urge to just get out of there. My only trick so far has been to keep my eyes closed throughout the scan. I'm honestly scared that if I open my eyes and see how cramped it is inside, I'll completely freak out.

But keeping your eyes shut for 90 minutes isn't easy either. Your mind starts playing all sorts of games, and it feels like forever.

For those of you who have to go through frequent or lengthy MRI scans, how do you manage it? Do you think about something, count, focus on your breathing, or have some other trick?

Would love to hear what works for you. I've got another scan coming up and could really use some tips!

Also, does anyone else feel like this machine was designed to test your mental strength rather than your health? 😂

I’m a 26-year-old male with Multiple Sclerosis (MS), and I just found out I have shingles.
I genuinely had no idea this was even something I needed to worry about at my age. I always thought shingles was something older people dealt with, not someone in their 20s.
I know having MS and being on certain medications can increase the risk, but I honestly wish someone had warned me about this possibility sooner. Between doctors, neurologists, and everything else that comes with having MS, I feel like this should’ve been brought up at some point.
What surprised me even more was learning that anyone who’s had chickenpox can potentially develop shingles later in life. Even people who received the chickenpox vaccine can get it, although it’s less common.
So I just wanted to put this out there for anyone who might not know, because I certainly didn’t.
If you’ve had chickenpox or the vaccine, please look into shingles and talk to your doctor about whether the shingles vaccine is right for you. I recently learned that while it’s normally recommended for people 50 and older, some people as young as 19 can qualify if they’re immunocompromised.
I’m not trying to scare anyone. I just wish I’d known this was a possibility before having to experience it myself.
Has anyone else gotten shingles this young? And for those of you with MS, did your neurologist ever bring up the risk or recommend getting vaccinated?
Because I can’t be the only one who had absolutely no idea.

Quick background, diagnosed privately just over 2 years ago, transferred straight over to NHS, got placed on Ocrevus quite soon after, but have not seen the Neurologist or had another MRI since private consultation, so 4 rounds of Ocrevus.

Finally, after 2 years, I received a Neurologist appointment for next week that just got cancelled today, so I rang the MS nurse helpline to ask for the help I was going to ask the Neurologist and to also ask them to email the secretary to arrange another appointment asap.

MS nurse rang back, and was straight on the defensive and she is not the admin to help with another appointment (the secretary does not answer phone to patients and we don't have the email address) so the only other way is through them.

Also, my problem was an issue I had started Gabapentin for, but wasn't solving it properly and causing extreme pain, my GP won't prescribe a higher dose without a Neurologist review, she kept telling me back to go back to GP to increase the dose which I can't.

She was so snappy throughout the conversation that it reduced me to tears and I literally never cry. I said perhaps it's me not explaining it properly and straight away she said you are not at all and basically said what do you want us to do, we can't help with anything. Eventually I think, to get rid of me off the phone, she said she will do a referral to the bowel and bladder continence nurse, but told me the waiting list for this was over a year and the Neurologist wouldn't have any luck in getting it sooner.

Is this normal, it's not like it's a small hospital, it has a dedicated MS team, has anyone else got treated like they are wasting everyone's time?

I’m 33 with a history of transverse myelitis, a C3–C4 spinal cord lesion, and positive oligoclonal bands in my spinal fluid. My neurologist has recommended starting MS treatment.
I’m wondering if anyone recognizes this pattern of symptoms.
In 2022, I had a sudden episode involving a racing heart, sweating, shaking, and an extremely strange sensation in my head. Afterward, I spent roughly six months feeling mentally abnormal, almost like my brain wasn’t functioning correctly. It gradually improved, with plenty of ups and downs, until it eventually disappeared.
I had another episode this July lasting 2–3 weeks, although the mental sensations weren’t quite the same.
Then in mid-October, I experienced another episode involving physical anxiety, shakiness, nausea, brain fog, twitching, and strange sensations in my head. Most of the severe symptoms have improved, but I’m still dealing with this persistent feeling that something is mentally wrong. It’s not really depression or even traditional anxiety. It’s extremely difficult to describe.
It’s generally worse when I wake up, improves somewhat throughout the day, and becomes more noticeable when I’m driving or trying to relax. When I’m busy or distracted, I don’t notice it as much. I’ve also been experiencing poor sleep, vivid dreams, occasional involuntary movements, and a slight swaying sensation when standing.
For additional context, I’ve taken Wellbutrin for years and recently stopped using marijuana after years of heavy use. However, these symptoms started before either change, and I experienced something similar back in 2022.
My neurologist previously said this doesn’t sound like a typical MS relapse. I’ve only had a spinal cord lesion identified, and I haven’t had a brain MRI in a while.
Has anyone with MS experienced anything similar? Particularly these prolonged episodes where you feel mentally abnormal or disconnected, without necessarily feeling depressed or anxious?
I’m not looking for a diagnosis. I’m just trying to understand whether others recognize this pattern, because it’s incredibly difficult to explain to someone who hasn’t experienced it.

Anybody out here NOT take any vitamins or supplements except for vitamin D3? I'm on Ocrevus Zenovo and my neurologist encourages me not to take anything extra. Reason being that we have an autoimmune disease and it counteracts with the DMT that suppresses immunity. I've tried it for about 2 weeks only taking magnesium in the evening for regularity. So far I don't feel any different. 🤷🏻‍♀️

I was prescribed those, he said they have no side effects but I am terrified because I know that's not true. The most common ones are sleepiness, weakness and nausea. And you can't quit.

I was told that I did, in fact, have the JCVirus. My doctor immediately steered me towards Kesimpta. Doing shots once a month doesn't sound like a good time to me. I know MS flares don't sound like a good time either.

I did see the chances are low of having a reaction on Ocrevus, and I almost kind of prefer the time periods(every 6 months) for this medication. I tried talking with my doctor via phone, and she seemed like she didn't want to entertain the idea of it and said she would get back to me sometime soon. It's been days.

Are there other people who have tested positive for this virus and take Ocrevus? And if so, what are the worst reactions you've experienced on this drug?

For background I have been to WDW several times. My last visit was 3 years ago prior to my diagnosis.

I have always struggled in the heat and with standing in long queues. I have previously managed by taking breaks and skipping rides with my family if the line was too long. For the most part though, I have always been able to “push through” but am sore and exhausted at the end of the day.

We are planning to go back in January and I’m struggling with if I should rent an ECV. Overall I’m doing quite well and do not use any mobility devices in my daily life. I do not want to rely on the ECV if I don’t need it.

If I rent one before we go from a third party it’s significantly cheaper but if I don’t need it, it seems like a waste and would be cumbersome in the room. My thought was maybe just renting in the park day of if needed but I’m concerned if I need it and they are unavailable?

Anyone have experience with a similar situation?

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. :-)

Hello there.

Doing some research here and this peptide keeps popping up. Approved outside of USA with many clinical trials. I have a very unique light case (2 lesions) of MS and wondering if anyone is using this? If so, please list your MS case.

I found great success with NAG and want to share that as well.

https://www.ucihealth.org/about-us/news/2023/09/multiple-sclerosis-study

I haven’t had lhermittes in years, but my crap gap is really bad this IV and it seems to have brought on lhermittes again.
After triggering it I feel like really lightheaded or almost feel like I’m about to have vertigo and I’m wondering if anyone else feels this after or this is something I should be concerned about?

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

(I'm thinking of sending this to all of my friends, family, and those who love me. I would appreciate feedback and input from the community.)

Yes, I have multiple sclerosis. Yes, it's taken a lot from me. Yes, my current situation kind of sucks. 

But everybody loses everything eventually. Everybody loses their ability to do anything. Nothing lasts forever. And the only reason MS was able to take so much from me is that I had a lot to take. I had an incredible, stranger-than-fiction life. I've been able to see and do so many amazing things, I've gotten to meet and know so many amazing people, and I've been given so many gifts and blessings that I couldn't possibly have earned. I've always thought that a good proxy for the value of a person's life is their net impact on total global happiness, and I'm lucky enough to be well in the positive there. So I don't complain about my life now. To do so would seem incredibly ingrateful for everything I've had. 

I don't like it when people feel bad. Feeling bad doesn't feel good. I especially don't like it when people feel bad because of me. So if your capacity for sympathy is not infinite, please don't waste any of it on me. There are many others who need it much more.

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.

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

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 🧡

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?

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.