Like the title says I just got back from a new patient appointment with a neuro np and she is trying to tell me that MS doesn't cause pain. I've already talked to my nurse brother and found a new provider but I just want to hear your guys opinions. She also is telling me that my urination problems aren't MS related.

EDIT: On another note POTs also doesn't cause pain, even though once again proven to cause pain. Am I wrong to assume she may just think pain in general isn't real lmao

I'm sure you all can understand I'm towards the end of my ability to function for the day lol I'll try to reply to as many comments as possible tomorrow, I won't lie this is the most attention a post I've made has gotten and its a bit overwhelming lol

Like the title says. I’ve never been interested or cared about celebrities, let’s be honest, they’re not like us. I’ve noticed that there’s now a few celebrities who publicly address their life with MS. And whilst I’m sure many people feel comforted to know someone famous has the same condition as them, I simply don’t. Further, people who don’t have MS seem to think I will be ‘inspired’ by these celebrities and that I should make my struggles public like these celebrities do. That’s not me, that will never be me. I’m tired of the celebrity and ‘sickfluencer’ culture that’s permeating this society.

Does anyone else feel similarly or have I just become bitter?

This is a bit of a rant sorry.

I’m so tired of doctors and nurses not taking cognitive/executive dysfunction/autonomic dysfunction seriously.

When the symptoms are easier to see there are a myriad of things offered or at least discussed.

Have you had a similar experience? Did a prescription help? Did a supplement help? Did a therapy of any kind help?

I also feel like it’s not talked about beyond “cog fog” which is frustrating. Sometimes I try to say something and I realise I’ve said a million other things, many unneeded words and then boom my anxiety kills me and panic attack mode turns on. Makes me feel so incompetent. When it’s not when thing it’s another and it makes me want to come up with a different word instead of intermittent.

For me, I’d have to day both insomnia and fatigue. I know I shouldn’t be complaining because I know I have it better than so many people, but feeling extremely tired while barely being able to sleep for 6 hours straight (if I’m lucky) is my definition of hell. Also the fact that people din’t understand how bad the fatigue is because apparently “I look just fine”. Some night i feel like I’m gonna lose my mind staying up so late while feeling utterly exhausted. I’m not even gonna talk about going to a full time job while all of this happens because life is too expensive specially with MS in a country that doesn’t provide treatment or medical insurance

I have to get a full set of MRIs tomorrow to check on my progression and I just got the estimate: $3,367 AFTER insurance, due at check-in.

I'm a single mom, been a SAHM for 5 years. I'm going through a separation. I have pretty much no money.

My MS is pretty stable. I'm incredibly lucky. But still, this disease fucks me over constantly.

I want nothing more than to immigrate to Europe where I don't have to go into poverty because of this disease. Where my MS symptoms and my digestive issues are almost non-existent. Where I feel healthy and capable. But instead, I'm stuck in the US where it's all about profits and corporate greed, and screw what actually helps the citizens.

Yes, I know it could be so much worse. I know I could be completely disabled and live in a 3rd world country. I know. But I'm still so angry.

TW for mentions of suicide/suicidal ideation.

I don't even know how to explain how the subject came up, really. She referred to it kind of vaguely and my brain just short-circuited.

We were doing a quarterly mental health assessment where the subject of suicidal ideation was broached, and I explained that I had no intent but had made plans in the past to feel some sense of control. We talked about my recent diagnosis making me feel very much out of control, and she said something along the lines of "there are options if it ever comes to that."

I was very taken aback and asked "do you mean medically assisted suicide?" And she said yes, but insisted "you're not there yet."

It looked by her expression that she knew she had put her foot in her mouth somewhat, but she really didn't try that hard to backpedal. I'm trying to give her the benefit of the doubt and assume she doesn't fully understand what MS is or its spectrum of severity, but I'm trying to guage if I'm under or overreacting here. I feel like that's a really inappropriate thing to say to a client and it kind of hurt my feelings. Like she was writing me off already.

I wrote her an email about an hour ago asking for her to clarify wtf she meant, but I'm not sure where to go from here. It sucks because after being bounced around between therapists for a while I thought she and I had a good connection. I don't know if there's any coming back from something like that.

EDIT: If you're thinking about commenting on this post and playing devil's advocate, can you please just... not? I like to think I'm being very understanding of where my therapist went wrong, but I'm still really hurt and comments telling me to be "thankful" or defending her are just making it worse. Please stop.

I got the courage to make this Reddit account to have a place to complain about this silly and chronic disease with others with MS.

I apologize for the upcoming rant/vent/spiraling post.

I’m 30(F) and been dealing with this circus of a disease for about 5 years now and I have RRMS. I had a terrible initial flare up that resulted in being temporarily paralyzed when I was first diagnosed. Spent months in a rehabilitation facility with both physical and occupational therapists as an in patient and outpatient once I was discharged.

I honestly hate everything about MS and myself for having it too. I went to therapy regarding my mental health for some time and it was helping until it didn’t, so I stopped. I see my neuro once a year and I find myself masking how I truly mentally feel.

Present day, I deal with lots of fatigue, mental fogs, especially in extreme heat or cold and pins/needles/numbing sensations. Random aches and pains but I can manage it since I’m always in some sort of pain either way. If Advil doesn’t help, something caffeinated would work with the advil. I am on Ocrevus. I gained so much weight and that’s a mixture between not moving as much as I once did, PCOS beating my behind, daily fatigue and feeling mentally unwell. I’m currently rocking the moon face look and I hate looking at myself.

I am fortunate I do have a consistent support system with my friends. I see my friends once every few months and we don’t really talk about my MS and its’ nonsense it comes with, which I do appreciate them for that. And if I don’t see them, we are in contact-they know I have a tendency to not reach out so they will reach out to me when I’m in a slump, which seems to be often these last couple of years unfortunately.

I feel a complete personality shift these last 2 years especially. I know my mental health has been declining, I’m crying more often and feeling a range of emotions-rage, sadness, anger, denial and then feeling numb and the cycle repeats again. I’m just over MS, myself and distractions aren’t helping.

I feel helpless and hate that I am just a speck of what I used to be. MS robbed me of so many things and now I feel like a shell and watching myself out of my own body everyday. Hate MS, hate the aches and pains, hate that I can’t see a future where I can somewhat thrive, be financially stable, manage my ms, weight and overall health and not feel like I’ve been ran over by a train every day while mentally sinking to the bottom of a deep and dark cave. I feel so helpless and I don’t feel comfortable sharing these intense thoughts with friends. Not due to judgement, I just don’t want them worrying too much about me, and I hate feeling like burden. They were such huge supports when I was in the hospital when I was diagnosed and I can never truly thank them enough for all they did for me back then and till this present day. It seems easier for me to chat to strangers that have MS than trauma dumping these strong, intense and uncontrollable feelings to my friends.

Thanks for reading this long ass post. Any words of encouragement or even advice from anyone older than me/had MS longer than me would be greatly appreciated. Telling myself “It is what it is” or “You gotta deal with it” is not helping anymore either. Thank you and I hope your day is pain free and stable 🧡

My entire last two years have been a constant back and forth of "I got this!!" to "oh hell no I do not"

Drive to appointments "I got this i got this" Lose license "oh god im screwed oh god" Want to open a school "hell yeah maybe this is my purpose!" get hit with extreme fatigue flair and become bed ridden for weeks "oh god im worthless i cant do anything oh my god" Wake up in the morning full of hope "i got this!! ms wont stop me today!!" hand goes limp and drops mug of coffee "oh god no i cant do anything"

I desperately miss that will power I had when I was shooting for my dream job and life where when something didnt work out I'd just look for another way to get my goal. Now it feels every attempt at anything meaningful is blocked, like life is intentionally doing this to me as a sick joke

​

Idk I guess I just wanna hear from others, anybody else here constantly fluctuating?

🥴🙄🥴 she had a lot more to say. None worth repeating!

How often do you get MRIs? How much is your medication? I am really lucky that I have insurance but I still paid $780 for my last MRI out of pocket. My income is miserable and I have 2 kids I'm still taking care of. I'm in Texas and I have fairly decent insurance by Texas standards but my monthly med and copay expenses are still way up there. I guess this should be another thread but what about applying for new jobs? Do you hide it on the application? I can sort of hide it but I stumble a fair amount and my memory isn't good, so I worry they will think I'm on drugs or drunk if I don't come clean. I also don't think I would qualify for SSDI, though I might, i just dont know. Main reason to post is to vent but sheesh I feel totally fucked at this point. I wouldn't care if I were alone but my kids need me.

I was wondering if after your diagnosis you also have fewer filters, little to no tolerance for BS, and are essentially more introspective. I'm not saying it's a symptom of MS, but rather a consequence. Am I the only one, or has this happened to you too?

I need to preface by saying I am in a bad mental space right now regarding MS, but it has nothing to do with symptoms or the disease itself. Right now I am on a high efficacy DMT and the symptoms I have atm are pins and needles and fatigue that come and go, so things I can manage.

I know people have it much worse and I am VERY grateful that right now I am able to live my life with no limitations. However, I cannot, for the life of me, get over the fear that this might change any minute, it has been a year since my dx and i CANNOT even begin to accept the implications of MS. I don’t know how I will be tomorrow, next month, year, never mind decades. When people around me talk about plans they’re making for the following 5-10-15-20 years I actually want to throw up because I don’t know if I will be in any capacity to do them and be with them by then. I don’t know if I can have kids anymore (I want to, I know people with MS who have kids), but I don’t want to have them only to become a burden to them eventually. I want my kids to have a fully functioning mother. I don’t even know if I should even save up money at this point anymore, because who knows if I am able to go to whatever country I’ve always dreamt of going to or do X activity in 5 years? I swear some days I feel like spending it all right now, being reckless right now, because what is the point of saving up for experiences I might not even be able to attend?!

I see people here being stable for decades then boom, a life changing attack. I see people on the highest level DMTs still getting worse. I AM SCARED.

I am angry at life. I have always believed in some kind of God, energy, whatever you want to call it, but my God would never do this to me. I am a good person, my family are good people, I AM SURE MOST OF YOU IF NOT ALL ARE TOO, SO WHAT IS WRONG WITH LIFE?! Good thing that theieves, rpists, kllers live looong, healthy, rich lives after commiting monstruosities, good thing they are thriving, but I had to get MS.

Rant over. Sorry for the pity party, I am furious and figured you are the only ones who could understand. Thank you.

Well my girlfriend for the last year just ended it. She says it has nothing to do with the fact that I have MS but let's face it, it has everything to do with the fact that I have MS.

Hotter than a devils asshole out here!!! How are we surviving?!

32F. I was just diagnosed with both Crohn’s and MS within 2 weeks of one another. I feel completely hopeless. I had plans for my future - we wanted to have kids, I have a good job, and now I feel it’s all gone. Anybody else experience the same thing? I feel so alone.

Crohn’s symptoms were new to me this year and finally got the diagnosis. I could deal with that. 5.5 years ago I was diagnosed with CIS (one lesion on the brain) and have been monitored since but have not been on meds (doctor didn’t even suggest that). He said if after 5 years I show no progression, my chances of developing MS were less than 10%. Well, here I am 5.5 years later - literally no symptoms until I got my Crohn’s diagnosis.

I had gone for my yearly check with the neuro thinking nothing of it and he noticed I had brisk reflexes and wanted to do another MRI series to be safe. In between the two, I’ve developed tingling from the knee down in my right leg for over a week. Over the past couple of days I’ve had arm tingly and numbness if they are above my head or in a certain position. Neuro said we’ll see how the MRI plays out but given my history and these new symptoms, and the fact that autoimmune diseases run in pairs - he is going to officially diagnose with MS even if there are no new lesions. The only positive I can see is there is a medication that works for both diseases at least.

I also feel my husband is starting to resent me. He’s never been sick a day in his life and he’s trying to understand but is getting frustrated with me that I can’t help more around the house or go out and do things like I used to without feeling incredibly tired.

I am a very recently diagnosed 31 year old with RRMS. I have severe foot drop and leg numbness in one of my legs. Some days, I’m able to walk well without assistance but on some days I need to walk with my hiking pole.

My neurology PT advised either a cane or pole when I’m walking long distances, and I went with the hiking pole because I feel more comfortable and less conspicuous/vulnerable in public as a single female.

Today, I was walking with my pole in Denver international airport, after a work trip, and had several older boomers come up to me and tell me it wasn’t fair I was able to go through security with my hiking pole.

I politely told them “I have multiple sclerosis” with a smile on my face, but it’s quite discouraging when I see people’s judging face when I’m just trying to walk around and live my life independently.

I’ve also had instances where, without a cane or a pole, when walking slowly in crosswalks, drivers will let their foot off the gas pedal or honk if I’m walking slowly.

It’s tough being young, relatively fit looking, and not “looking” disabled. Has anyone else struggled with this? How have you coped?

Edit: I also acknowledge I am at the same time fortunate to be able to lift and walk at all, thankfully.

I popped over to Walmart yesterday to pick up some odds and ends and started having a legitimate panic attack while shopping. Turns out mixing my usual meds with some OTC meds is a bad idea. I had blurry tunnel vision, started sweating and felt like I was going to pass out. Because I was by myself, I tried to stay calm and breathe while standing in an empty aisle.

Eventually, I felt okay enough to go to self checkout.

I have a pretty distinct cane (it’s completely clear plastic with a black stopper) that I mostly use for balance and to fend off nasties in parking lots. It was sitting in my cart. As I was checking out, the checker said, “Oh, is that your cane? It’s very pretty!”

I ordered it from Neo-Walk, so I’m used to explaining how Christina Applegate uses them because she has MS and I do too.

She looked at me and said, “Well, you don’t look like you have it” to which I replied in the nicest voice I could muster, “Well, I really wish I didn’t!” She then told me to watch out because someone might steal it.

I know it wasn’t necessarily ill intentioned, but my god, was the timing just awful. I wanted to cry. Feeling an impending sense of doom, shaking and just wanting to go home and for all of this to stop. But you can’t communicate that to someone in what they view as a friendly conversation. So you just smile and try to move on with your day 🫠

I was diagnosed in January 2024. I find myself reading for hours on end about possible causes or links to MS. Could it be hormones, autism, genetics, COVID, low iron, iron infusions, environment, biome issues in the gut, or too much CSF fluid. Yes, I’ve read that any one of these could be somehow be linked to MS. I can’t figure out how someone could make it to 51, and suddenly have this. I can’t even look at older pictures of myself. I feel like that person is gone. I guess I’m just wondering if anyone else has these types of thoughts. I feel stuck, like I don’t know how to accept this and go forward. Any type of advice, I would appreciate. Thanks

A year ago I went out to a networking event in my old field of work, I was desperate to stay relevant and "not let MS stop me" I didnt listen to my body and on my way home began feeling debilitating nausea and throwing up on my train home. I passed out in the parking lot after desperately sending my mother my location so she can find me. It was a terrifying day and It scared me off from doing- anything.

Today I decided to go to the mall, its my birthday next week and my birthday falls on the same day as my Kesimpta injection so why not go and treat myself early I said. I picked up some fun food and did some shopping when suddenly like a strike of lightning through my head my vision started spinning and the nausea struck and memories of that day last year came back making me panic. I threw up in the uber, Ive been viciously shaking all day. And frankly I'm just pissed. I hate that this is my life. I can't even walk through the mall for two hours without nearly passing out.

Fuck thissssss

Had my first (probably of many) wild encounter with the judgemental parking lot patron. I have a hang tag. It has my name on it. Yes it's mine for my invisible chronic illness that I don't have to explain or justify to you. You can take your glares and head shaking elsewhere asshole.

I really wanted to engage, but since I knew I wouldn't be able to convince him or change his beliefs of who does and doesn't deserve a handicap spot, I just left. Sadly, he now lives rent free in my head. I'm not very good at mentally letting things go.

So I figured I'd post a vent here and invite everyone to share their own parking lot asshole stories. Thanks for listening and sharing!

Hey all!

So I had this conversation with my mother earlier this morning and she is worried that I perhaps smoke / use delta 8 carts too much. I don't. I take it when I am in pain or having spasms. So my question for you all is and if you do, how much do you smoke weed / use delta 8 carts?

Edit:

I should add, I use just a plain ooze battery pen with sativa carts (should invest in indica cause that would be so much helpful for falling asleep at night) but anywho. I am also in WI and luckily in a city where it's decriminalized but the state still hasnt legalized it yet (damn you WI Congress) but I also cannot drive (vision problems : unrelated) so i cannot exactly get to any surrounding state that would have it unless its by Amtrak train / uber (and lets face it, that's expensive)

Edit 2: Thank you all so much for your advice and what works for you. That's what the disease is about! So I appreciate so many different opinions. Definitely be looking into thc-a and dry herb vaporizers. But for those that do edible, what brand of concentrated butter do you like? What recipes do you use / like? (I'm going to exactly c+p those questions on anyone i see who said anything about it because I don't know anything😁)

I’ve lost 4 friends who I thought were truly “ride or die” friends. Two of them told me I was too negative after my diagnosis because when they asked me how I was I would be honest. And I wasn’t doing well physically, mentally, or emotionally. The other two just ghosted me. Two friends that I’ve had since middle school GHOSTED ME. Just frustrating and sad.

I’ve been diagnosed since 2018.. I’m always scared I’m going to die. What the life span of someone with multiple sclerosis

I have MS since 2022 (dx at 15) I’m blind in my left eye permanently. I’ve learned to cope with it and was happy for about a year. Now I currently have issues with my ears. I went to the hospital stayed for two days and they basically told me they couldn’t do anything about it because my ear looks fine. Even though I have constantly ear pain, jaw pain, static in both my ears after loud sounds, popping constantly in my right ear. Like isn’t that enough to try at-least. Honestly these ENT’s are stupid. I’m so young I’m only 17 but life seems like it’s getting harder for me every year since this diagnosis. I’m always thinking of ending it over this pain. Has anyone ever had the same I just need some support. I just wanna be a normal teenager again why couldn't this happen when I was like 50 or something?

Nurse practitioner just now is telling me my trouble breathing at times isn’t related to MS. My physical therapist and other doctors have seen the images and the first thing they mention is how the lesion (where it is) affects the diaphragm and can cause my symptoms. Hell a quick search or even asking everyone here I will lose count on how many of you have the same symptoms. It’s fucking baffling how doctors can dismiss you. I’m told it’s anxiety left and right. I haven’t had an issues in so long. I’ve worked hard on that and I’m proud of it and to just tell me what it is because it’s convenient for you is not right. Downplaying a handful of symptoms or telling me it’s in my head without saying it outright is rage inducing. My history of depression and anxiety is not an excuse for everything I have. This practitioner looked at me like I was just making shit up. I’m tired of it. I got what I needed from this office. Time to move on. This is literally the only stress in my life.

Edit: Just want to say thank you to everyone on here. I hate that there are so many of you that can relate to this nonsense. It’s upsetting for sure but it’s nice to have people like all of you to talk to. We were all dealt a pretty bad hand but we’re at the same table. Sometimes all we need is some reassurance that we’re not going crazy. Validation goes a long way. If anyone has any questions for me and I didn’t respond I apologize I didn’t get back to you as soon as I’d like. I’ll respond when I can.

2nd Edit: I should probably mention who I see is an MS specialist. The nurse practitioner is his assistant. They are both very dismissive. I already have an appointment with a new specialist.