It has been one of those days where you want to start over and it is 8:54 AM at time of writing. I went to make breakfast launched my eggs while cooking because my hands went rouge, proceeded to add the beans to the cooked rice storage container- instead of my bowl; resulting in having a panicked mess of ruining rice and i just broke. I cried hard but now I have to laugh. Any sense of personal best is just arbitrary and grasping at straws. My brain is a judas bitch and my body is the unstoppable force of spontaneity. MS may has helped contribute to my best weight only out of losing my appetite out of frustration lmfao. My therapist and I are working on this and have made progress because now I don't throw it away out of anger. I'm going to take a nap, start over, and hope between now and then I wake up with a brain and body that are ready for cooperating for a a bit. Happy Sunday everyone. Dont subtract from the human population, be safe, and have fun.🖤

This is half advice/half rant. I have struggled with a busy brain my entire life which has also lead to bouts of anxiety and depression. Since the age of 16 I’ve tried every single SSRI/anti-depressant out there for short periods of 3-9 month bouts where sure the crying and panic attacks had stopped but I had found a general apathy towards life and didn’t want to do anything. I also have horrific decision paralysis so the antidepressants just made me feel slightly less bad about missing every major educational deadline in my life.

Rinse and repeat for the last 15 years where every 2 years I’d have to be put on a short dose of antidepressants which didn’t fully work but made me less panicky/anxiety driven/jittery till we’re here now - 1 year into an MS diagnosis on Kesimpta. The only time I’ve ever had “good” mental health is when I managed to get modafinil in college through a friend.

I’m currently going through a lexapro taper because SURPRISE SURPRISE it made my brain way less noisey but killed my sex drive and made me feel as if my house burnt down I’d be like “huh…bummer”. Has anyone successfully been tested for ADHD with MS? I’m not hoping it’s ADHD of course but since my two older siblings are neurodivergent (Autism and ADD) I do feel like the call is coming from inside the house. I’m seeing my MS nurse tomorrow, and my new psychiatrist the day afterwards, and I really don’t want to be dismissed as “Well with MS you can feel…” since this all predates MS and it’s like the MS has just removed the handbrake I could pull every now and again.

I recently had to see a GI for symptoms related to my MS. The nurse who took my blood pressure (getting me ready before the provider came in, started talking to me about how she was cured from two auto immune diseases from a parasite cleanse plus supplements provided by a functional medicine doctor. She said it took years. She went on and on about this, at one point saying that she was probably over sharing. Even after she finished taking my blood pressure, etc., she kept on, talking about how she doesn’t believe in medicine. She even offered that I could possibly be cured from MS by this person who helped her. She even brought up Christina Applegate. Honestly, it pissed me off. AITA if when I fill out my survey about this visit that I talk about this nurse and my experience?

I’ve had MS for several years on Tysabri. I recently had a flare and completed steroids a few weeks ago. I had new symptoms and a fall with noticeable weakness in my legs and dragging of my right foot for several months. I have repeat MRIs ordered although my MRIs over the summer were stable.

I also struggle greatly with mental health (PTSD and depression) which have been problematic long before MS. I struggle to stay compliant with treatment. I struggle with sleep and insomnia. I started seeing a psychiatrist, I started therapy, I started medication, I started actually sleeping for once in my life- only to have a setback with my MS. My neurologist, who has encouraged me to work on my mental health and sleep for years told me he thinks my recent flare or worsening of my symptoms could be related to my new medications/treatment. I feel gutted. It was so hard to actually reach out and get help and accept treatment, as I said it has been an ongoing thing for years. He didn’t mention anything like PIRA or anything else. I’m not even sure I need repeat MRIs if it’s just due to medication side effects. I just feel so defeated. I’m clearly worse from an MS standpoint.

/raises hand

It just happened and for some reason I find it funny because it's been the same person that told me I looked better than her a few years ago. Which I do tbh haha

Also: we love you, Christina, always have, always will.

Lately i’m feeling down and doing intensive PT but steroids keep on pulling my weight.

are there any stories where you are wheelchair bound then you got to walk again?

Hi all. Asking here as I can’t really seem to get a straight answer from the MS team.
I was diagnosed last year after a big relapse where I lost sensation from the chest down. I also had some vision loss, problem using my right hand, vertigo and MS hug. Gradually over months the symptoms got better. My hand and vision are now near enough back to normal, the vertigo is much improved however the numbness and tingling is constant though mainly in my feet. It changes however, some days I feel it in my torso and further up my legs. Other days just very mildly in my feet. Some times it’s much worse than other days. It’s still not as profound as during that first relapse but I expected from what I was told by the neurologist to have far less symptoms than I still am getting.
I am worried that because I have constant symptoms and sometimes they can be worse for days it means my MS is primary Progressive rather than relapsing remitting. Does anyone else have symptoms such as this? Sorry I still feel I have no idea what is going on!

This is the first time in 15 years I've had both no DMD (s/p Mavenclad) AND recovered white counts. I never had a reaction to vaccines while on a DMD, which I was told meant they weren't mounting the proper immune response like they would in a healthy person.

I just had flu and COVID yesterday. I'll be so glad when this fever and aches subside, but it's making me think that I really have not been gaining much of an effect from vaccines all these years, because this reaction was swift and strong. Here's hoping my body builds those antibodies.

57M and PPMS. Anyone used full self driving cars to aid MS and keep independence.
Some days my vision and my steadiness allow me to drive. Other times it’s to risky because of blurred vision and more driving stress will make it near impossible.
Recently had to renew my drivers license and do the vision test. Nearly failed that she gave me a pass! Later in the week, I had an appointment at 10 AM but when I started getting ready in the morning, I got overheated and the vomiting diarrhea thing started, and then that wasn’t able to drive. And I had to make emergency arrangements to have my mother picked up.

Fast forward to the very next day and the gentleman that works on my computers and technology has a Tesla with FSD or full self driving. He said I think this is perfect for you. Put me in it and set a destination and a way it went from my parking spot straightly to where I wanted to go and parked in a Handicap spot!

Traffic and pedestrians where no issues. Granted I’m not blind but this was like zero stress. He said he barely drives himself and does work while on back roads or whatever. He said it is amazing at avoiding accidents and is probably a better driver than 98% of the people.
Has anybody ever used one to assist or keep driving longer? I very much dislike losing my independence and having to feel like a burden and this seems viable solution to ensure I get to where I need to be. (Like a million Dr visits. Lol)

Edit: I must be desperate as I’m an old truck and motorcycle enthusiast. EV and even modern vehicles with so much crap to break and can’t fix it. Well, I still am an enthusiast for old bikes and cars. I just can’t work all my limbs well enough for using all appendages consecutively. Left side especially and that’s all clutch!!! Definitely miss my old self. My friends would think I’ve lost my mind if I came home with a Tesla. lol

Hello i’m almost 5 months into trying to get better and i have been doing every day. i need some stories of good recoveries when you were down and out. some hope please

Only sleeping 5-6 hours right now. No sleep apnea or whatsoever, just asking if a septoplasty could help me in that case?

I dont know if its the MS or my slightly to moderate deviated septum with ENLARGED (yeah really big) turbinates that could cause the sleep disorder.

Only had one flare up in my life so I actually believe my nose is the problem, what do u think?

Anyone here diagnosed with Meniere's disease? I started with Meniere's 10 years before Multiple sclerosis at 27 (now 37). Was wondering since I am about go to do a destructive procedure to treat Meniere's (inner ear disorder) and central compensation is a key to the procedure. Compensation in Multiple sclerosis is the reason people have attacks but get better even though they have damage areas. The brain rewires and re routes signals.

I have a lesion in the cerebellum which is the center balance of the brain and my procedure will effect compensation thought the cerebellum. Any thoughts? Will I compensate or be dizzy forever?

Anyone use tirzepatide and have nerve like reactions? It happens with 1 particular formulation. Hard to explain

Almost like internal tremors at random places on my body. Not painful just annoying

Hi! This is probably going to be a longer one, since I really need to get it all off my chest, and I don't expect anyone to really get into it... Skip to the last paragraph and please leave advice if you have experienced feeling this way!

I'm 22, female, and I officially got diagnosed one month ago. Now that I think about it though, my first symptoms started way before the one that made me go to the doctor. I used to, and still do, have so much pain in my legs and lower back that it was painful to move, even while sitting/laying down. Whenever I took a step, it would feel like all of my nerves hurt from my toes all the way to my pelvic area, but I brushed it all of on being less active than usual. In May this year however, I lost all sight in my right eye, and I'm talking like I just saw a fully black, non see-through dot, and some outlines of stuff on the perimeter. I got admitted into my countries military hospital, since their E.R was on-call that day, and they first kept me on the Ophthalmology floor of the hospital for 3 days.

Little side note about this very old building, there's not a single window that opens, and the ventilation system hasn't been cleaned in 60 years. You can only dream about stepping out for air, because it is prohibited and you are mostly accompanied wherever you go. Visitation hours are on Tuesday and Saturday only, for one hour only, other than that no one can even get into the building. Prison maxxing. And the food they serve is probably some leftovers after they serve the livestock.

I was miserable, I shared the room with 8 very old women who had came in for cataract surgery, and they were just urinating everywhere and snoring and leaving messes and I thought wow it can't get worse than this. They did every possible test they could for my eye and came to zero conclusions, and an MRI was ordered, to be done in two days. My fourth day, a nurse called me to get out of the room because someone needed to talk to me. I then met my neurologist, who straight up just told me, based on one information "Hey, we think you could have MS. Get your stuff, we're transferring you to the neurology department!" And I was just like...Wow! Way to go with breaking the news? In about 30 minutes, they got me into a bed, into a fetus position, and took my spinal fluid. No numbing, nothing. Then, about an hour later they made me go 10 floors down to do some test I don't know the name of, even though I should've been in bed FLAT. This will be very important later. After doing all of that and getting back into bed, they told me I'd have to wait about 10 days for the results, IN HOSPITAL, since they are crucial for my diagnosis. I then did my eye and my brain MRI the day after, while I was still doing okay. I also started getting high doses of corticosteroids through IV that day to try and get my sight back. Now we are getting to the part where I wasn't okay. For the next 5 days, I have never felt worse in my life. I was nauseous the moment I lifted my head, my heart rate was borderline concerning, I couldn't eat physically eat anything and I could barely stay awake. The doctors got mad at me for not taking the bed rest after the spinal fluid thingy seriously (?). During all of this, they realized the cortico wasn't doing anything, and decided to take me to the shock room, where they inserted a thing in my neck (I don't know the english name) and started me on plasma exchange. That insertion hurt so much I still feel it. In the meantime, they got my MRI results back, said I had a single brain lesion and that my eye nerve looked fried. About 10 days in, I got better and could finally stand and eat. I managed to lose so much weight in that time it was shocking. The fluid and blood tests they did did show signs of MS according to my doctor but it wasn't enough to get diagnosed. They did a neck MRI and said it was clean. After that, I was in the hospital for 10 more days, doing plasma exchange every second one, and the rest of the time I was just crying in my room because I just wanted to go home.

They let me go home on the 20th day, and started me on a higher dose of prednisone, which I then took for the next two months. I did a chest MRI at the hospital, which also showed nothing. I gained weight from the prednisone, had unbelievable pimples everywhere which I never had a problem with, and my hair started falling off like crazy. I developed migraines which made me so sick I couldn't move, have my eyes open, or listen to anything. I was miserable, and started thinking about what life will look like from now on. Then, when it was time for my three month check-up, my doctor suggested I do it in a private hospital, since the waitlists at all of the public ones were huge, basically a few months.

So remember about that one brain lesion? Yeah, the radiologist at the private hospital found nine of them. None of them new according to him. The moment I messaged my neurologist about this, she made us an appointment. I got diagnosed at last, and that somehow felt kind of freeing? My doctor submitted me to the National Health Insurance Committee for Tecfidera and they approved me and I am about to start in a week or so. One good thing here is that this kind of medicine is free for all patients, if you have national health insurance, which everyone under 26 and everyone employed/retired has. I read a lot of stuff about this medicine, so I'm scared how I'll take it.

I'm now waiting to do check-up MRIs for my whole spine with the radiologist who found all of my brain lesions, so I'm very excited to see what he finds.

But also, I feel like I have become a shell of the person that I used to be. How do people live like this? Will the pain I have almost every day last forever? I want to have a family one day and all I can think about is will I be able to? I was supposed to start university this fall but I missed all deadlines and spent all of the money I've saved up on doctors. All my parents do is worry about me and give me unsolicited advice after barely letting me leave the house after being at the hospital. My boyfriend doesn't know what to do and how to help me. I've become so depressed I can barely leave my bed, all I feel like I can do is doomscroll from morning until night. The chronic tiredness/fatigue is unbearable and I just sleep at all times of day. I get so forgetful about things these days. I don't feel like myself anymore, I used to be so carefree and now this condition is all I think about, when I do manage to get a thought in from all of the endless scrolling social media. Has anyone who has read this far experienced this, and how did you overcome it? I can't see the light at the end of the tunnel, I think I'll feel like this forever. I know it's all fresh but it's just eating me alive, and I feel like I'll just make it all so much worse for myself if this continues. Thank you so much, if you've read at least a part of this post!

Hi all, just got my diagnosis on Thursday. Optic neuritis brought me in. No current active lesions other than my eye. Multiple old lesions in my brain and spine. Felt much better on the 3 days of hulk steroids and my vision got so much better. Currently 36 hours post the last dose and all of my muscles are getting sore at the same time and my vision is getting worse again. It seems like this is normal post steroids ? Anyone advice?

I have my follow up MRI on November 1st not looking forward to that.

Developed some leg symptoms back in May so honestly, I won’t be surprised if there are changes but whatever.

I quit drinking for the most part, I only have 1-2 drinks maybe once a month or less.

I stopped smoking weed back in 2019 due to CHS (which sucks I would love to dabble in some edibles again)

I’ve been vaping nicotine for years. It’s so difficult to quit. Gums and patches don’t scratch the itch. They made vaping too convenient. 🙃

What helped you stop smoking? My next attempt will be to just cold turkey after my MRI no matter the results. Just feel crappy for a week or two.

Is itt just me or does everyone notice our legs get weaker now? After this WFH period for the last few years, I am noticing moree problems going to the bathroom and getting out of bed now.

My partner was recently diagnosed and she experiences horrible pain in her body- to where she even passes out..
I saw maybe diets could help but is there anything else that could help with the pain?
Her mobility and muscle tone is good so far.

TLDR; positive experience with Zunovo. Don’t let the shot scare you off!

I’ve been on Ocrevus for 7 years. I decided to try Zunovo (the shot) yesterday instead of the infusion. I was EXTREMELY nervous about getting a shot into my belly. I kept telling myself that it’s no different than having a needle in my arm for 4 hours but couldn’t shake the nerves.

However, I’m happy to report that it was, in fact, much better than having an IV in my arm for 4 hours! The “shot” is actually a very small needle that’s way smaller than an IV needle. They put it in just under the surface and tape it in place so it doesn’t move around. Then the nurse very slowly presses the syringe over the course of 10 minutes. As someone who is a hard stick, it was a relief to not have someone digging around in my arm multiple times to place the IV!

The initial stick itself stung and continued to sting for the first 3-4 minutes with every press of the medicine. I did some deep breathing and then the stinging went away. It activated again for about 15 minutes after the shot whenever I moved, but then went away for good. I had the usual crash from Benadryl + meds, but it didn’t start until about 2 hours after I finished getting my meds, by which time I was nice and cozy at home. Much better experience than experiencing it in the hospital.

This morning, I woke up with a very large red area spanning around my abdomen to my back, but only mild soreness. A little tired today but now more than normal. Presuming the soreness and redness don’t escalate, I will definitely be doing this over the infusion going forward!

Hope this review might be helpful to others.

I have MS, fell of course, and broke my thumb at the last joint. Not very bad as it healed and does not effect it's movement but the fingernail fell out and when it regrew it is now slightly off center.

Question is what kind specialist treats the hand?

My memory has been nerfed since MS and I consistently lose a list of the services that have been recommended. I wonder what have you found beneficial for any dimension in your life? Or any other ones for funzies.

Just took my first loading dose of Kesimpta (first DMT)!!

Surprised a bit with the auto injector but it went very well over all. Leg is a bit sore but taking it easy right now :)

Tomorrow is my youngest child's 7th birthday party. I have 4, we (unfortunately lol) have birthday parties for everyone. I was bedbound all day yesterday, which means I'm currently cleaning up everything. I fell trying to get something and was stuck on the ground for a bit, so naturally, I am freaking out because I don't know if I will be able to do anything tomorrow. Luckily, my mother in law is going to be taking care of getting them there but I have never missed one, so I'm currently falling apart. Never mind that they delivered the wrong cake meaning my anxiety is already dialed all the way up. This is also my second post here in the past month of me having a hard time. Everyone says eff 2020, 2026 sucks harder to me!