Hi everyone, seems we just got this lovely membership on the mailbox and now we are member of the club that nobody wants to be part of ;)
I’m the husband of a 42F that received her diagnosis yesterday from her family doctor .
Angry, scary, confuse I think you all know it .
I’m an educated person and I like to learn , from the past 24hour feverish researching looks like her case is one of the “good ones” .
Her first symptoms were 13 years ago, about 10 years ago she even had a MRI and a neuro , who said not to worry. Throughout the last 13 years she had mild symptoms without any functional loss (although multiple small lesions appeared on the MRI)
Latently she has had some tingle on her lower body and this is how she started the process again and this time she got a diagnoses . She is angry because she wish she has had it 10 years ago, but I wonder if we didn’t have this “care free time” for free, anyway nothing to change here .
We are based in Montreal, so anyway local with experiences to share are more than welcome !
I feel that after paying so much taxes for so many years , at least now we will recover it ;)
From my very noobie understanding she will be a good candidate to DMTs with a strong prospect
Of having a good quality of life . We have a small daughter and we really want to enjoy life with her ! (No more pregnancies for us so that easies the process )
Right now we are waiting to be called but a clinic , yesterday our MD put us on the generic list and the Jewish one , we are going to ask tomorrow to have our file sent to the Neuro hospital and the CHUM, apparently they are the best options available in town.
Finger cross she can start her treatment soon !

Hi everyone!

I’m finishing up my psychology degree at William Peace University in Raleigh, NC, and am currently collecting data for my honors thesis!

The goal of my research is to explore the relationship between nature and mental fatigue. If you're 18+, I’d truly appreciate it if you could take 10-15 minutes to complete the following survey anonymously:

Canadians: https://docs.google.com/forms/d/e/1FAIpQLSe3AmnYkc14nsBMmhoBk_X8LuqUwQIk6sEoxI5JSHZwISESig/viewform?usp=header

Americans: https://docs.google.com/forms/d/e/1FAIpQLSdw7on7KPvHW7-OPwkY0ikpeEN0bza9RMVo1P2c7ajPcaISJQ/viewform?usp=header

Thank you! If you have questions upon completion, please let me know. I'm happy to answer any and all questions in the comments.

Edit: to add the unshortened Google Form URL because the shortened link was not working properly for everyone. Please try again with the unshortened link.

So weird. I’m relived in some ways because symptoms have been an issue for years (my doctor had me read up on the current research on prodomal symptoms of MS) and I’ve been called every medical form of “crazy” there is to put into an EMR.

Symptoms started acting up at the end of May.

I just have one lesion at C3 on the spinal cord, so I’m very lucky it’s early on and we’ve caught it quickly. OCBs were a whooping 13. Had a fun little adventure to neuro-oncology because the lesion was presenting a bit atypically, but huzzah, we have a diagnosis.

Technically I’m “Clinically Isolated Syndrome” per my team, but I’m in the process of playing heehaw with insurance for Briumvi infusions given the OCBs and overall inflammation.

Physically I feel like a mess. My leg arm and leg/foot are weaker, and when I get tired/stressed/sick they act up and just stop working. Lots of leg spasms up the calf to my glutes. Thankfully I started Baclofen.

I’m also nauseous as heck since June. My MS doctor says that doesn’t have to do with the MS though? So no one will give me Zofran yet.

I’m also like so tired all the time dudes?

Is this it? Just a mild-moderate feeling of “blah” forever or will the DMT help a bit? I start neuro-rehab Thursday (and have been waiting since June to get into that clinic), so excited for that.

Just kind of getting it out. It’s been quite the ordeal to process.

Does anyone find that fatigue ramps up if you're watching or reading something that requires real concentration?

I can watch reality TV, or a game show, or something comedy related without an issue. But put me in front of a crime drama, or something I have to really focus on, and after it's finished I can barely move for the fatigue it causes.

My husband and I have decided that we would like to try for a baby. Unfortunately, I’m 41 so am aware that my chances are much lower than they would have been a few years ago. I’m also aware that it could take a long time to conceive, if successful.

I have emailed my ms team (I’m in the UK) to let them know and ask them what I should do regarding medication etc. I’m currently on Kesimpta. I have a neuro appointment in a few weeks anyway, which is my yearly follow up, but I just wondered what other people’s experience has been. I’m really keen to start trying asap but have heard that they sometimes advise you to wait a few months.

Thanks in advance. 🙂

So I made a joke about getting matching tattoos with one of my best friends a couple months ago and she booked the appointment in 2 weeks. I’m nervous because this is my first tattoo and I’m on Tysabri which kinda wipes out your immune system. I have it scheduled for a a little over a week before my next infusion. Has anyone had any issues getting a tattoo while on a high-efficacy DMT?

Today is the day I reached my Medicare Saftey Net (last year it was May). Time to breathe a bit and book in all those extra specialist appointments (if I can even get them).

My Psych cost $16 today!

Tengo mi mujer que tiene esclerosis múltiple y me gustaría entender ayudarla y todo lo que sea necesario y nose cual carrera elegir si psicológico y luego neuropsicologia o medicina y neurología tengo 40 años soy ingeniero informático y voy a hacer todo lo posible para investigar una solución a ellos ayudadme comunidad

I got diagnosed with ms 3 months ago after i had a pretty bad relapse that left me unabel to walk more than 100m.3 months ago i also got corticosteroids i feel better right now but i still have a weaknes in my legs.Will i ever get better or is it something that will be with me for the rest of my life.

Also how long did you see imrovements after a relapse?

I’ve been smoking since I was 15, and I had my first MS attack at 19. I’m 23 now, and after being diagnosed with MS this year, I’ve cut down quite a bit, but I still can’t seem to stop myself from smoking around 5–7 heated tobacco sticks a day.

The thing is, I genuinely feel disgusted with myself when I smoke, but it’s become such an ingrained part of my routine. My lifestyle is so stressful that smoking feels like the only way I can relax.

I also know people with MS who smoke or used to smoke, and seeing that makes it difficult for me to fully accept how important it is for me to quit.

I’d really appreciate advice from people who have managed to quit smoking. I think I need either some encouragement from people who’ve been through the same thing or a reality check about how serious this actually is.

Did you notice any difference after quitting? Did you feel like it helped your MS in any way? Did you take any medication to help you quit?

Thank you!

Hi,

I got diagnosed with MS at the end of August at age 23. I used to be a relatively high performing middle distance athlete but due to a plethora of injuries over the years I’ve not been as active recently.

I’ve been struggling with a hip flexor issue since about March, and upon reflection this was probably the first sign of MS as I’ve read it can affect your hip flexor mobility. I’ve picked up swimming as an alternative form of cardio, but I’d be lying if I said I didn’t just want to be running instead.

I know for a fact that MS shouldn’t completely inhibit my ability to run when you look at athletes like Lina Nielsen. I was wondering if anyone knows any good hip flexor exercises to get my body moving better again?

Thanks!

Hey yall! I have been Diagnosed with MS for about a year now and have been on Kesimpta since. Im about to be married and of course now the question is..how do i prevent any accidental Pregnancies. So i wanted to ask the Ladies maybe what method do yall use? I've been thinking of getting the Copper IUD because not gonna lie im scared of using something with hormones..especially when its time to stop using it. Im just very unsure about what to do so i would appreciate if you guys could tell me some of your experiences. I just turned 22 and i feel like im super lost when it comes to this topic and im just so scared of doing something wrong :')

Hi everyone! I'm from Colombia and have MS. I currently receive Ocrevus (ocrelizumab) every six months.

I'd love to pursue a master's degree abroad, but I'm worried about losing access to my treatment or having to pay for it out of pocket.

Has anyone with MS moved abroad to study and managed to get Ocrevus covered by public healthcare or private insurance?

I'd love to hear about your experiences, especially regarding pre-existing conditions and international student eligibility.

Thank you! ❤️

How often are you guys having to reach out to the MS nursing team? How long does it take for them to respond? Do they respond on weekends?

What types of things can you reach out for? I have uncontrollable shivering fits now because of the cold, that something I should be reaching out for? I’ve told them about it previously. I neurologist should know as I told him I’m a consultation. I was told the only thing they could do for me is give me muscle relaxations but they don’t want to just yet. I’ve not found anything to work.

I have to be careful when trying to warm up to stop the shivering, if I get too warm, I’ll get nerve pain in my skin that feels like I’m being electrocuted in the skin. Extremely painful, indescribable pain. I’m currently taking tramadol 20g twice a day ( I’ve been told this is the max dosage, was taking Gabapenten and pregabalin before but they didn’t work at all. Found tramadol is the only thing that takes the edge off. Although I’m a bit worried to be taking an opioid so young and to be taking it everyday but it’s the only thing that helps).

I was just recently diagnosed with MS. I have yet to meet my neurologist (first appt is in 2 weeks) and start a medication. I've heard that alot of meds are SUPER expensive and its freaking me out. I'm single income...am I going to be able afford this?!

Sorry if there's another post about this, it's probably a really common question

I just got diagnosed and am thinking of going on a stimulant for the severe fatigue. Is there one people recommend? Are there any that you would not recommend?

15 months ago I got ON which I healed pretty well from, a month or so after I noticed right sided tingling on my thigh, torso, and forearm, which honestly coulda been there because it’s mild but I was so hyper focused on my body I noticed it around that time. That has been on and off the past 15 months sometimes pretty consistent, the thing is I don’t remember a “flare” that caused this, and isn’t that how RRMS works? Wondering if this is more common for PPMS.

I am (or was) a healthy 23F that did not expect a MS diagnosis ever. It doesn’t run in the family and it has turned my last couple of weeks upside down. It started in september when I thought I had orbital tunnel and then I couldn’t pick up my water bottle , then my leg couldn’t bend. My left side of my face was swelling, my speech was suddenly going out. I felt drunk all the time. After 3 er trips within a week I was diagnosed with somatization disorder and migraines… what a joke. I had 2 CT scans that were clear, so no stroke but I had my entire left side just quit on me in a matter of days. The fatigue.. I can’t even begin to explain. i’ve never been tired like that before… ever. I never felt more defeated by my own body. The only answer I was given was extreme headaches and possibly made up symptoms.

I was told to follow up with a neurologist which led to me finally being scheduled for an MRI this past saturday. After I finished my brain MRI, the tech came in and told me to wait just a couple minutes before leaving as he wanted to get ahold of my neurologist. I knew then this was more serious. The strangest feeling of sitting in a diagnostic clinic waiting for some of the worst news of my life. I was told to go to the ER and I got admitted that same day. I’ve never been poked and prodded like that before in my life. The neurologists assigned to me were amazing but to hear this news at 23 is jarring. I am lost because I don’t want to lose my independence to this. i’m applying to graduate school soon, i’m working, & I have to pay my rent. I have so many other responsibilities and I don’t want this to kill me.

I am at a loss and maybe just not in a space to figure out what this means. I don’t want to feel tired like this all the time. I don’t have infinite sick time. I should be the healthiest and happiest i’ve ever been and in the course of 2 months all has gone to shit.

Hi all!

I finally started treatment last Friday after almost a year of being dx with RRMS. My current insurance is through Medicaid. However, they've denied me treatment with Kesimpta twice and when my neurologist took it even further with a third party review, it was still denied :(.

I currently am getting Kesimpta through the assistance bridge program with Novartis. As most know, that is only free medication for up to a year - as long as insurance continues to not cover it.

I'm hoping one of you lovely people can help and or share their experience with insurance. Insurance isnt really one of my strong suits when it comes to knowledge. Any tips and tricks or do's and don't do???

I am fully planning on getting on a different insurance plan before the assistance program runs out.

Please help 🙏 🙃

"These findings support further investigations of the potential anti-inflammatory and neuroprotective properties of GLP-1 receptor agonists..."

https://www.medpagetoday.com/meetingcoverage/ectrims/123593

Earlier this year for my m.r.i I was told they saw some activity they didn't like so they scheduled a second for the year 3 months later. I assumed because we had a toasty summer that was causing usually flare up activity, I knew I was feeling more off then usual. Once I got the second m.r.i I got a phone appointment with nuero and I new that it was bad otherwise I don't hear until follow up at m.s clinic. He tells me new lesions are showing and the one most worrisome is on my brainstem. I have lesions and black holes on brain and have had lesions on spine. My clinic appointment (usually every 6 months was moved up a little. Over the past few weeks my speech has been off, I mess up words or stutter to figure out what to say a lot more. It's happened in past but not to this degree. Every time I sit down I get lightheaded which is really annoying, if anyone else has the same issue with the stem lesions and it caused the sitting and light headed nonsense, have you found anything to help or make it easier?

So, this is kind of vague, but throughout my life, there was always a sense of being clean when I am. Meaning, if I showered this morning, I could know without remembering because I feel...clean.

Now, I can be fresh out of the shower and I always have this feeling like I could use a shower. Not that I feel filthy, but this status recognition never toggles anymore. I could get out of the shower, dry off, get dressed, then get right back in the shower. I find myself, at noon thinking "I could use a shower" when I just had one a few hours prior.

My Kesimpta injection is absurdly painful every single time. I do everything right, I follow the instructions, I take it out of the fridge 1 hour in advance to give it the chance to come down to room temperature, I've started it in April and all of the injections have been painful except for one. My last one was by far the worst, like 10/10 pain, I let go right after the second click and it swelled up like a bad mosquito bite, but the next day it was fine. I told my care nurse that I would try it again one more time but I don't think I have the guts to :( it doesn't last long but it's extremely painful. Everything I read online says it should be pretty much pain free.

Has anyone experienced this before?

So I got switched to Briumvi by my Doctors 3 months ago and I must say the side effects definitely are something else. I took Kesimpta before hand and was used to getting a sinus infection every other month. My neurologist told me there isn’t really a big difference to side effect between them, I would most likely end up with the same sinus infections. Now I’m actually laying in bed for the 2nd week straight with bronchitis and laryngitis. I feel completely drained and exhausted I don’t even have the strength to eat anymore. My doctor told me it’s because my immune system may take longer to recover but phew… it definitely took me off my feet. Is this what I should except from now on? I’m really scared that this is a reoccurring thing for me. What are your experiences and what’s something you did that maybe helped ?

I am currently without a primary care position, and my insurance is changing January 1, so I need to wait until then to be able to determine who will be covered under my new policy.

In the meantime, I’m fairly confident that I need to start an antidepressant. I see A therapist, who cannot prescribe medicine, and she suggested this to me weeks ago, and as more time has gone on, I believe she’s actually right.

Is this something my neurologist might be able to prescribe for me if I were to message her, or is this something outside of her scope? Additionally, I have historically been on some antidepressants, so I at least know the ones that have not worked for me historically, would that be overstepping to tell her that if I messaged her?

My only other alternative would be my gynecologist, who’s pretty awesome, but I’m not sure if she’s gonna be in network next year either.

I appreciate any feedback you guys can give. I’m kinda drowning and really don’t want to wait until Jan.