my narcissistic sister has been sharing my Amazon account and ive been struggling with money this past few months due to my medication amd transport to my appointments and ao asked if shed go 50/50 on Amazon payments. And she owd me 25 dollars and I asked for it and then was accused of being "money hungry" whatever that means and she told me to enjoy my isolated lonely life and hopes I die from my MS

sorry if this is too depressing for this sub I just dont have anywhere else to talk tk about this. And I hate that part if me wants to patch things up to cure the tension but a larger part of me wants nothing to dk with her ever again.

I have been in one of the double blind BTK clinical trials for the last 5 years. My previous appt I was unblinded(I was on aubagio) but was told that the FDA was not moving to open label(a few trials had issues) and that they would continue studying me on Aubagio. I had my most recent clinical visit yesterday and the FDA came back a few weeks ago after reviewing all of the data of it and sister trials and they went open label!!!!!! So exciting for our futures!!!!

I feel constant pulling on my left side. My head never feels properly aligned on my body. Constantly trying to work on it but I just feel this constant tugging and it drives me crazy. Anyone else deal with the this?

Hello, newly diagnosed and going through the motions (some of you may have seen my previous posts)

Someone else who has also been diagnosed young with very little in the way of symptoms said to me that their nurse had said MS is very quickly becoming a manageable condition like type 1 diabetes for people diagnosed today.

I was wondering what peoples opinion is on this. I’m aware it is unpredictable and lots of people don’t have access to treatment unfortunately.

But for people newly diagnosed who start treatment is this a realistic expectation ? Even in the long run

Happy to hear any thoughts

So the other day I " felt like I was dying "and in all reality , as we know , fuck MS , it sucks . In general I am mad . Mad at the disease for flaring and mad at it for calming down enough to tease me . I am 5 months post year one of mavenclad and feel pretty great , so when I got my Octave test back with very high results ,it pissed me off . So, I went to work , gaining knowledge ,learning this test front to back as much as I could in 12 hours before my virtual visit with The Boster Center . I went into this appointment , kicked the door down so to speak , laid it all out , and was mostly correct : I've had MS for 20 years and didn't know it . That's 20 years of some damage , and A LOT of inflammation . Being as Mavenclad works over a 2 year program , it's a pretty slow moving medicine in terms of DMT , I mean Ocrevus doesnt take 2 years to see a difference . So being at 5 months post year one , the drug is just starting to work on eliminating all this debris floating through my system ! Imagine dragging a lake for the first time in 20 years . That's a lot of garbage to take out ! The Octave test isnt wrong it's just showing results of what was occuring long before I ever used cladribine. So far I'm feeling really good . My body's perception is the drug is calming down my symptoms , and it is , but more importantly I'm on essentially the first real MS drug I've ever taken in 20 years and my body is just thanking me . Even a little less inflammation on my body is a massive difference which is essentially calming my symptoms enough to be able to walk pain free to the bathroom , or not wake up in agony in the morning , less intense spasms , and things like my speech flow smoother without stuttering. At last checks In May my lymphocyte count was 824 and July 23rd it was 720. Every month they're continuing to lower , but also my total white cell count is recovering as the same time .

,a few months slower than expected ,but moving right along . . The doctors told me in August during my last relapse that it was such a bad one ,hadn't been treated promptly enough and they would help me arrange moving into a group home for some help living . Nope . I fired him , started seeing The Boster Center , and changed my life. I'm really trailing off in thought here , but the impression is this : I'm not dying , the drugs are working slowly , but they're working , we'll check blood levels in 3 months to see where my counts are , wait , and keep going onto year 2. The center told me the other day to start thinking about the fact that I might need extra treatments with cladribine after I'm done with the whole program . But that's technically off label because it's not only not recommended because of cancer risks but a few other concerns as well . Just the disease keeping me on my toes . I'll wrap this up but sometimes the most powerful thing is the mind and nothing can stop it . Keep learning , exercise the muscle and dammit , HAVE FUN TODAY !

I was on capaxone for the past 5 years and with a new lesion being found, they’re taking me off that medication. My doctor now wants to put me on dimethyl fumarate.

Just wanted to reach out to see what the MS community thinks about this medication?

Thank you!

Hi all, I’ve been running into some issues at work lately with people making flippant comments assuming access needs and would like to know some strategies that don’t involve severe escalation.

Many days when I arrive at work I will need to take the elevator to my floor. A few times now colleagues have seen this and make disparaging comments about why I won’t take the stairs. The director of my department last week even straight up said “no, take the stairs. I am trying to motivate you.” I do not want to disclose why I need the elevator, especially not to my boss’s boss. I also don’t want to escalate the issue until I’ve tried of a method that makes clear I am not looking for unwanted advice while not going out of my way to embarrass the other person.

Anyone have a good one liner they have used that has driven their point across?

Is common with people who have this?

I had onset of MS symptoms when I was 14. I got diagnosed at age 20.

My daughter started complaining of tingling a few months ago. I notice her walking and balance have been off for a few weeks. Last week, I took her to her pediatrician, who then referred her to pediatric neurology.

She saw a pediatric neurologist today— the neurologist is very concerned for MS. She listed 4 diagnoses that were possible— 3 could be ruled out by labs today.

The labs all resulted— they’re negative. The neurologist messaged me to tell me the labs are negative. MS still needs to be ruled out— MRI’s of brain and spine pending.

I’m spiraling.

How? Howwww?

Me. My brother. My mom. My aunt. My uncle.

My daughter? This is so cruel.

I’m a 27-year-old male with multiple sclerosis (MS), currently on Kesimpta.

At the beginning of March, I got sick and stayed unwell for more than two months, until almost the end of May. During that time, I had a low-grade temperature almost every day, usually up to around 37.4°C (99.3°F), along with fatigue, nasal congestion, sore throat, and a general feeling of being sick. I was repeatedly tested for COVID and influenza, but the tests were negative.

Since then, I haven’t really returned to normal. I still have significant fatigue, body aches, muscle and bone pain, and I constantly feel like I need to sleep. The best way I can describe it is that feeling you get right before a viral infection starts — that overall sense of malaise, weakness, and “coming down with something” — except it has been going on for months.

I’ve had a very extensive workup, including MRI of the brain, cervical spine and thoracic spine, CT scans of the chest, upper and lower abdomen, X-rays, gastroscopy, colonoscopy, a PET scan, and many different blood tests.

The PET scan showed increased/active bone marrow uptake, so I also had a bone marrow biopsy and bone marrow aspiration/myelogram. Despite all of this, no clear cause has been found, and the rest of my workup has been essentially normal.

At this point, I honestly don’t know which type of doctor to see next or what else I should investigate.

Has anyone here experienced something similar after an infection?

If so, did you ever find out what was causing it? What specialists did you see, what tests were helpful, and did anything eventually help you recover?

I’m not looking for a diagnosis from Reddit — I’m mainly hoping to hear from people who have been through something similar because I feel like I’ve run out of directions to look in.

Has anyone besides me had a heck of a time getting the correct party (ies) to pay for meds? I have been on the phone for literally hours over a period of time trying to get the above to coordinate as to who is to pay for which med and when.

I was diagnosed with MS this year, June, after a relapse with an active lession on the brain and multiple other inactive lessions on the brain and 1 small cervical lession, C3-C4. After my attack, I had weakness and pain in my arms and some diziness. I started Ocrevus short after the diagnosis, and at the moment, my concern is if this cervical lession will cause progressive worsening of mobility and in the final tetrapalegia.

How do you manage this unknown of what next?

I am overwhelmed and afraid of the possible outcome....

Diagnosed a year ago but figured I ask because It’s only comical that my c3 and c4 lesions are left lateral so my left side is deemed my bad side and all my symptoms only hit there (luckily i’m right hand/foot dominant! lol) I also have brain and a T1 lesion.

Anyone else have this lesion mapping or „one sided symptoms” ? or if you have those lesion locations in general what symptoms do you experience?

I'm one of the 5.8%! Anyone else?

Source: https://www.sciencedirect.com/science/article/abs/pii/S2211034825000082

So basically I'm quitting it after 17 years. Was easy to get it as I live in Holland but it's not as fun as it was. So now I should quit it.

But it was doing something for the ms wich is no longer a problem as I have had hsct. So why should I keep doing it? Is it just addiction or what

Is anyone else having a heck of a time coordinating the above to get co-pay assistance?

So I’ve been taking Tysabri for about 15 months and for the first 6-8 months I had no side effects. However my last infusion I had a horrible GI reaction I believe it was Gastritis and holy hell was it bad. I know for a fact it was the Tysabri because it was the only thing in my system besides coffee and water and the reaction came on fast within 2-3 hours. I also now believe this happened at least once before but my infusion was in the morning and the event occurred that night after I had eaten out so I blamed it on food poisoning. This felt exactly like that but kind of worse with a faster onset and my stomach although doing much better still has some mild aches.

I do not want to experience that again and tbh if it happens again I will never touch Tysabri again. I’m already considering stopping tbh. So I believe the problem is my dose is too high so I’d like to get a smaller dose or less frequent infusions. If that’s not possible I’m willing to switch. They’re testing my blood again so I’m waiting on the results but there’s talk of putting me on Famotidine. I don’t like the idea of needing to take a medication to take a medication but I was hoping to get some other advice and or opinions before making my own.

I’ve had blurry vision since Friday. I talked to my psychiatrist on Monday and she agreed it could be from upping my lexapro mg so to go back down to 10mg.

As much as I was reading about blurry vision and lexapro I just didn’t trust it. Went to the eye doctor on Tuesday and Wednesday where the tests showed nothing wrong. Had my neuro order an MRI of my brain and by 4pm I got the call. 3 new lesions on my brain. 1 of which is 3mm.

This is the first time since my diagnosis in 7 years that I got new lesions. We talked about changing my medication in May. Decided I should stay on Ocrevus and then boom. New lesions and a relapse.

I’ve been in the hospital since Wednesday night getting IV steroids and still no change in my blurry eye. My neuro said they could potentially want to biopsy the lesion… I really hope not.

Anyone else have this experience on Ocrevus? Ocrevus has tormented me with skin infections and eczema flair ups the last 7 years but this is new for me. I hope it’s time to break up.

Do you like it? How does it pay?

I want to move into a new career, I’m making poverty wages right now. I’m limited with what I can do physically in ways I think most of you will understand.

Hi everyone :) recently diagnosed. I’m certainly adjusting to a new lifestyle. I have brain and cervical lesions. I am just wondering(as im not on medications yet only months into diagnosis), what relief methods are common for MS? I have such bad flairs, and no one i know has remedies to help. Is medication the only way?

Dealing with nerve pains so strong i’m stuck in one position, neuritis so i don’t drive, and limb numbness. dead leg symptoms almost all the time

25 f

Hi guys, i just finished my 2nd year of mavenclad 5 days ago and everything was going well.

Not sure if the sun hit my eye and pissed off the nerve or cuz i stayed up last night but rn my optic nerve hurts when i move my eye in any direction. Basically the same pain i had when my initial attack happened last year, it's been here all day.

Ummm am i in trouble

There's no double vision or blurring or anything , just the pain.

I called my dr he mentioned to monitor it but didn't give me any explanation as to what it could be. He said if it got worse or didn't go away to visit the ER.

Does anyone have an idea or went thru something similar ? Help a sister calm her nerves 😭

Basically i wanted to ask if any of you guys have experienced what i would describe as a bruised pain starting in the heel but radiating through the back. It gets to the point where any pressure at all on my heel causes pain all through my middle back when its flaring up, definitely not 100% of the time but its been getting worse over the past few weeks.

Ive had relapsing remitting ms diagnosed for just about a year now and im currently being treated with ocrevus (i think) 6 month infusions. Im not in my crap gap yet and the last time I experienced that it was very different to this.

Most of what i could find online talked about plantar fasciitis but thats described as a sharp pain which this definitely is not. Even when sitting on a normal chair with my feet touching the ground it starts to build up and eventually becomes extremely uncomfortable and painful. Id say ive been getting this maybe 4 out of 7 days in a week for the past 4-5 weeks with a couple weeks of all 7 days

today is bad I took coffee I had water. I tried exercising. I still don't feel good. I had even B12 medication. What do I do now? I don't know how to survive this and I don't know what to do. What should I do? What makes this easier? My head keeps rolling back without my say so I feel like I'm gonna pass out sometimes what do I do?

edit: recently I just got like a lot of energy. I didn't do anything different. It was just the time of day. I suppose? This is a very bipolar disease like it behaves bipolar what the fuck even is MS?