Looking for recommendations for a private MRI clinic in Metro Vancouver please. Public system taking too long thank you. #mri

I’ve always been a bit of a outcast who doesn’t confirm, I’m a bit weird I like dark humour and enjoy gaming in 22f I started ms with not many around me and even now there’s less. Does anyone else get that way? I made a small Snapchat group for people with ms if you ever feel that way please join us ❤️

https://snapchat.com/t/SVG4VjAL

Diagnosed just over a year and a half ago. Not yet on medication but keep reading before you jump on this point. I had some other medical things going on initially but in my view probably should have gone on medication 6-8 months ago as I feel like symptoms are ramping up.

I've read lots of articles about high efficiency DMTs early plus all the post in this group. I've had new symptoms during this time and I just don't want to risk further or faster damage given I also don't know how long I had ms before I was diagnosed. Likely years. Neurologist makes me feel a little crazy that she says things are stable and doesn't seem in a rush. Says that if it's stressing me out I can go on medication?!

So my question for you all is which DMT if you get a choice. She gave me some brochures early on but this time have me mavenclad, ocrevus, kesimpta and tysabri. Honestly though if you think another option is better id like to know. Shed recommending mavenclad.

Thanks for your support everyone.

I was diagnosed with MS September 2024 and everything moved so quick. It started with me losing vision in my right eye and being hospitalized for 5 days. Optic neuritis. My main concern was my JCV level being high where I was a higher risk of PML.

A friend recommended for me to go see this MS specialist that her sister was going to. Was told he was great and it's been going well for her. So, I was able to get an appointment with the doctor 2 weeks after I was diagnosed and was grateful. He was very knowledgeable and wanted to start me on Tysabri asap. I agreed and now have gone through 4 infusion treatments.

The doctor and I have been communicating through the portal via messages. Every new symptom that I've been going through, I immediately message him to let him know. His responses been very vague. He also didn't remember that I started my first infusion in October and when I brought on a side effect from the first infusion, he asked me when do I start treatment....I had other concerns and when trying to reach him on the phone, I don't receive any call backs and told that messaging through the portal is the best option.

Two days ago, I reached out and told him that I've been having left arm numbness for 2 days and my right eye comes and goes with blurriness or dimness about twice every week. I didn't receive a call from the office until the next day asking to come in the following day to see another neuro that I've never met. I only wanted to speak with my current neuro who took my case and nobody else. Instead, I made an emergency appt with my PCP and he was able to get lab work done, along with a referral for an MRI. My PCP was concerned that Tysabri might not be working for me.

Was I wrong to tell the neurologist office that I did not want to see a different specialist and instead went to my PCP to have labs done? It's been very stressful and I felt as if my neurologist didn't remember my case or cared enough to look at notes in my chart to be concerned.

Sorry this is a lot. I'm still trying to wrap my mind around everything.

My first infusion is scheduled for Friday and I'm bricking it a bit. Does anyone have some advice for the first infusion?

It's at the NHS in UK if that helps

Hey everyone!

I’m just wondering what your MS hug feels like?

I’ve been having a new, unusual pain, and I’m thinking it’s the hug but everywhere I’ve looked online doesn’t describe it in the way that I do.

Selfishly, I don’t want to make an appointment at the doctor for nothing, so I just want to see if anyone else has similar descriptions before I decide to make an appointment.

For me, it seems to come out of nowhere. It’s an intense pain that radiates all along my ribcage, but only where there are like.. free floating ribs? Nothing near the sternum. It reminds me slightly of getting a stitch in your side after exercise but it’s not isolated to one spot. And boy does it hurt

Hi everyone,

I was diagnosed with MS a year ago.

Two years ago, doctors accidentally discovered lesions on my brain during an MRI. The scan was originally ordered to check my pituitary gland due to high prolactin levels. A year ago, my spinal fluid was tested, and the results came back abnormal. Then, about a month ago, my doctor confirmed that my diagnosis is official under the updated MS diagnostic criteria.

Since my first MRI, no new brain lesions have appeared, and doctors can’t determine how old the existing ones are. Over the past two years, I haven’t developed any physical symptoms or noticed any mental changes.

Now, my doctor is strongly recommending that I start medication right away, but I’m hesitant. I’m especially worried about the potential risk of developing PML.

If anyone has advice or personal experiences to share, I would really appreciate it.

Thanks!

Update: I’m positive for JC virus

Hey everyone,

My wife tested positive for COVID, and now I’m feeling symptoms too. I’ve been on Kesimpta since September last year, and this is my first time getting COVID while on it.

I know being on a B-cell depleting therapy means a higher risk of complications, and my doctor has mentioned antivirals before. But I’m honestly a bit scared of taking them , side effects, interactions, etc.

For those on Kesimpta (or similar meds), did you take antivirals for COVID? How was your experience? Would you recommend them for sure? Is there anyone who also skip anti viral?

I have my infusion scheduled to be in home and my dr told me to go get bloodwork prior to it... but I forgot. Is this something that I'm just tripping over or should I definitely reschedule??

Does anyone get Botox for cosmetic reasons?

I’m on Ocrevus and have been contemplating trying Botox for minor cosmetic fixes, such as smile lines. I’m not looking for anything drastic, just a little assistance. However, I’m uncertain if I should avoid Botox while on Ocrevus and dealing with our incredible illness of MS.

I genuinely don’t want to cause myself any harm for something so insignificant.

Hi guys and gals I'm new here, I was diagnosed with Ms November after a year, I had a very bad turn and was sent to hospital, I could say what something was, was very scary for me and after the mri they found i have three brain lesions one on the left one on the right and one at the back, i also have one lesion on my back, it's been such a hard journey getting to were i am now, i didn't know if I could do it as i couldn't think or speak correctly, my walking was really bad jittering and jolting and balance was bad, i wasent a religious man but i prayed layed in that hospital bed and broke my heart as i didnt know what was happening to me, I have been better than I was as times gone on but learning to deal with it, does anyone else get a feeling like stiffness in your head? My head also gets tremors/jitters, i start my first treatment of ocrevus February 10th so very soon, this is the first group I have joined so do apologize if I have gone on haha, I had to move in to my parents house this last year after all thats gone on but I need my own space as I'm 37 and as you can guess we all need our own place, I'm unable to work and I don't know we're i go from here, it's all new to me. Again i apologize if I have wrote to much 🙂

In 2021 I had a big flare up. I had complete numbness on my right hand/arm and slow react time on the left. I started playing video games again and I swear playing zombies helped bring my reflexes in my hands back lol

i (m, 27) have a new ms diagnosis following a work incident where i was unable to lift my arms over my head. 3 cervical spinal lesions were discovered

my PT keeps assigning neck exercizes for pinched nerves to do hourly at home and when i do them, it amplifies the pain im in. PT says this is of no concern, "nerve pain gets worse before it gets better", has also not addressed arm/leg weakness. when i stop PT and home exercizes, the pain decreases. i AM on gabapentin 900mg

neurologist says theres no pinched nerves currently, but i should continue with PT anyway for my weakness, lift mobility, and neck mobility

is this normal? i dont have anyone to talk to

Re: the post the other day about feeling trapped in the US. I have the rare privilege of a Canadian partner who I could immigrate with if we wanted to. So my question is for Canadian folks with MS—what is your experience with health care there? I’ve read some stories about extremely long waits in regard to other care needs and am curious how it can be for folks like us. Thanks!!

Transitioned to Ocrevus in 2022, the first year no side effects. Then in 2023 the last month leading up to my infusions, I started developing skin infections. Usually by the end of the first month post infusion they go away. Neurologist said it’s a side effect of Ocrevus. Has anyone else had this happen, if so any way to minimize it. Not a hygiene issue, start the day showering and end the day showering. Shower after working out, I’m a little OCD about cleanliness. Use natural soaps and deodorant, and natural laundry cleaners. Just tired of it always being something wrong.

Hi all!! I have been very dizzy the last few months but specifically this week. I started Kesimpta last night but have been pretty dizzy before taking it so I don’t attribute Kesimpta to the dizziness though it could be making it worse. It’s pretty hard to deal with and alarming. Do any of you other folks suffer from dizziness??? How do we combat this constant dizziness because this is impacting my quality of life as most things do with MS. 🙃

Hi! I was diagnosed with RRMS back in 2021. I mentioned this to my husband who looked at me like I’m crazy lol. I noticed that when I’m feeling sadness, like while reading a book or watching TV, I feel nerve pain from my neck down my right arm.

My first MS symptom was Lehrmittes but I haven’t had that since 2021, I’m not sure if this is somehow related because it’s a similar feeling just not due to moving my neck. Anywho nothing concerning to me, I just feel a little crazy and don’t know if anyone else gets this too!

I was diagnosed with MS in July 2023.

I am highly active - competing in trail events, marathons and ultras.

Please if newly diagnosed ask me anything as I wish to help others.

Has anyone used a TENS device for MS pain relief? I've never heard of them before, but a friend just told me about them.

I'm not trying to promote any particular product; as I said, I've only just heard about them.

Here's an NIH study from 2018 that suggests that TENS devices don't help with spasticity but might with pain and muscle spasms.

So my question is this. I have foot drop after running for say 15 minutes. The lesion is there all the time but what makes the food drop after 15 minutes if the lesion is always there. Is it swelling round the lesion or the activity. Just trying to understand what's happening in my own body. I have to wait till March to see my neurologist an its frustrating. I have so many questions.

So, about six months ago I was diagnosed with “probably MS/possibly NMOSD/otherwise godknowswhat”. I’ve started Ocrevus treatment since. A few days ago I had appointment with another neurologist, who looked at my MRIs, told me that my lesions are highly unusual for a MS, my negative oligoclonal bands and AQP-4 antibody tests are also unusual and possibly false negatives because LP was performed while I was on steroids. So, she’s not sure if I should be diagnosed with MS in the first place. Not that this is exactly new to me but somehow it unsettled me. I don’t know what to think about it. To sum up:

1. I might actually not have a MS. Yay!
2. All the alternatives are actually much worse:/

I’ve a very normal viral fever and cold - My MS symptoms are peaking and death doesn’t sound so bad rn.

Hi I'm researching different afos and though there might be shoes specifically made to counter the foot drop/scuffing, I'm at the point where now the top of my big toe gets scuffed on my shoe and I kinda would like to play sport or run without the imminent fear of death, has anyone found something that really works for them?

Hello, I was just diagnosed with ms today. Any advice? My hands and feet just went numb one day and since then I’ve lost some mobility in my hands tight muscles around the body. It’s not so bad? Anybody been on kesimpta? Anyone try bpc157? I’m trying to keep as positive as can be.

I love my neurologist so much! She just called me from home and talked to me for 10 minutes 💓 (I live in central US and she called at 19:30.)

However, she did diagnose me with PPMS. So, there's that

Just came from the MS clinic today and met my new neurologist. Diagnosed last week. I'm feeling so much better about my diagnosis. I was told with my age (44), being female, white and having only sensory symptoms my prognosis is good. She said my MS is mild so far and if we start meds right away she expects it to stay that way for a very long time. I have chosen Kesimpta and paperwork has begun to start that. After bloodwork, vaccinations get updated and insurance/government assistance get approved I will be set. Should be about a month or so. If it takes longer then we will contact Kesimpta Go Program and hopefully they will help get me started sooner while we wait. The Dr and nurses were amazing. Such a huge relief. I might get a good sleep tonight finally

Today I was in my sit-to-stand lift (at home) while my fiancée was dressing my hospital bed.

I felt severe leg spasms coming on, so I yelled for my fiancée to come adjust my feet in the lift (I have experience with this, as I nearly slipped out of one in the hospital due to aide stupidity/incompetence).

Immediately after the spasms, I felt lightheaded and ended up passing out for a minute or two. My fiancée had to put her arms under mine to keep me from crashing to the floor, out of the lift.

Has anybody else experienced this.

Hi all! Should I take my Tylenol before my kesimpta dose or after I do the first shot? Or same time?

I am so curious to know how long you all have had MS! And also, do you count from when you had first symptoms or official diagnosis?

I've had an official diagnosis for 7 years but first symptoms were 18 years ago!

Anyone have advice for what to expect with IvIG? I had my 1st infusion last week and am still tired and achey & feel pretty stiff (not painful and not immobile) in my neck. Is it because this was my 1st dose or what I should expect going forward? I Super Hydrated before and after but this will be very inconvenient after my next scheduled dose since a week later I'll be visiting my daughter in Australia (I'm in NYC area). Just need to know what I'm dealing with here.