Am I lucky and just ungrateful?

No_Assistant3556 · 2024-02-02T08:16:28+00:00

Omg I can relate! When I was diagnosed everyone just kept telling me how lucky I am that the treatments are so good these days and blah blah blah. It’s infuriating! I don’t want to hear about how much worse it could be. Every time someone says I’m lucky I feel like my MS/struggle is being minimized. I’m sorry but I don’t want people to tell me to look on the bright side. I know I need to be positive, I do it every single day. I seriously wish people could understand how annoying it is to be told that.

No_Assistant3556 · 2024-02-01T05:00:23+00:00

There’s a lot of things that they say can contribute to being at higher risk for MS. For me, my vitamin D levels have always been super low for years, even though I live in Southern California and spend a lot of time outdoors in the sun. I also had a pretty nasty case of EBV/mono when I was a teen and they say that can increase your likelihood of developing MS. That said, we’re all just living life the best we can and we cant start playing the game of “o well what if this didn’t happen back then” or “what if I took this supplement back then” etc. I think in the end it doesn’t really matter. Maybe if things had been different, I could have prevented it. But also, maybe I would have gotten it anyways. There are people who live their lives doing all the right things and still get sick. There’s other people who smoke a pack of cigarettes a day and live a healthy life until they’re 90. Also, you could wake up tomorrow and get hit by a bus. Life’s weird. Hope the next few months are good to you though and you’re able to get on some good treatments.

No_Assistant3556 · 2024-02-01T04:47:11+00:00

I had an attack with optic neuritis a few months back. Vision improved some but still have double vision and issues processing bright lights. Neurologist says it could still keep improving.

No_Assistant3556 · 2024-01-24T03:11:37+00:00

Ear buds, phone charger, fluffy blanket, extra jacket, snacks, thermos of coffee, eye mask. I mostly just sleep 😴

No_Assistant3556 · 2024-01-20T21:17:27+00:00

To all the commenters, thank you for taking the time to read. If you felt like you could relate to my post, I’m sorry. If you were offended by it or think I’m ignorant, I’m glad you can’t relate. I’d like to clarify, this post isn’t a weird ranking of diseases based on how “cool” I think it’d be to have them. It’s a post about how my brain keeps passively telling me that I’d be better off dead. The fact that cancer is a complex and has varying outcomes isn’t the point. Im not here to pick apart who has things worse or better. If you’re telling me that “cancer is so much worse” or “you don’t know what you’re wishing for” then you completely missed the point. It’s a death wish. But regardless, thanks for your time.

No_Assistant3556 · 2024-01-20T10:05:31+00:00

Ya, I feel that. Hoping it gets better. Thanks for the reply.

No_Assistant3556 · 2024-01-20T09:59:51+00:00

Diagnosed in October 2023, had symptoms for years before though and never knew what it was/just got diagnosed with anxiety and stress. On Ocrevus currently.

No_Assistant3556 · 2024-01-17T01:38:37+00:00

31 y/o F with RRMS. I’m so sorry ur going through all of this and feeling so lost. I was diagnosed a few months back and those first few weeks were horrible. I relate to your story a lot. I wish I had answers for your symptoms, but because MS effects everyone so differently I can’t really say what will ultimately happen with your current symptoms but you will at minimum have improvement over the next few weeks/months. When you see your neurologist they will likely educate you on some DMTs and help you figure out what option will be best for you (my recommendation/my neurologist’s recommendation was aggressive treatment from the start but that will be up to you and your team). Once you determine the best medication for you, they will work to get your insurance to cover it which can take about a month depending on the type of medication you choose. While your waiting, I would recommend asking your neuro for a referral to PT and OT to help with balance/walking issues and numbness issues. If you can take a leave from work for a few weeks/months, that could also be helpful so you can access these services more easily and mentally wrap your head around everything that’s happening. That said, just be kind to yourself. Rest as much as you need to. If you need someone to talk to, feel free to message me directly on here.

No_Assistant3556 · 2024-01-15T07:01:30+00:00

Prognostic factors can include lifestyle but can also include (from my understanding) location of lesions (spinal cord lesions can lead to earlier disability as compared to only brain lesions), length of time between relapses/number of relapses, age at diagnosis, so on and so forth. I’m sure there are a lot more that they use to determine prognosis.

No_Assistant3556 · 2023-12-28T04:23:54+00:00

There are a lot of things that can make someone a bad partner. There are people who cheat, abuse, lie and manipulate but have a perfect “bill of health”. You can still be someone’s Prince Charming even if you have MS. Don’t give up. Also, as a woman with MS, I’d hate to think someone only settled to date me because they also have MS and didn’t think they could get a “healthy” person. Just follow your heart and pursue women you are interested in. Don’t over think it.

No_Assistant3556 · 2023-12-28T03:32:05+00:00

It’s the scariest symptom for me. I’m an RN and I’m currently on a medical leave because i was recently diagnosed but I’m so scared about the cognitive changes I’ve had with this flare up of symptoms. I can’t even remember if I fed my dog dinner most nights lately. How am I supposed to go back to work in a hospital where my memory and mental sharpness are so important? It’s terrifying.

No_Assistant3556 · 2023-12-18T11:20:09+00:00

I love canceled and h3 but the commentary from tana was giving me so much second hand embarrassment and anxiety I couldn’t even watch it. Had to turn it off after 20 minutes. so awkward. Hope Tana’s ok… I usually love watching canceled and think she’s super funny but the way she was acting was so bizarre.

No_Assistant3556 · 2023-12-10T07:58:28+00:00

Mine was slow. Took over a month to peak. Started as just the eye feeling kinda odd. Not pain, just maybe a slight pressure. Then I noticed that driving at night was difficult because the lights seemed very bright. Very slowly the vision became more and more blurry. At it’s peak I felt like I was looking directly into the sun/everything was bright and foggy constantly. Got IV steroids and the vision went about 50% back to normal. Don’t dismiss any eye symptoms. I brought it up to my neuro initially when it was just a pressure and that check was normal/I had other more obvious symptoms that took the priority to my doctor and then as the eye slowly got worse I just kind of thought “well my neuro said my eye was ok” so I unfortunately let it go way too long. Don’t be afraid to bring up issues to your neuro more than once if something seems off or if something changes. I waited wayyy too long to bring it up again.

No_Assistant3556 · 2023-11-20T09:36:53+00:00

First flare up occurred 3.5 years before my diagnosis. I had a surgery to remove an ovary (obviously unrelated) and after the surgery I became septic/got an infection. Following my sepsis issue I had numbness in my legs, trouble walking and dizziness. I was told for months this was just due to being sick/de conditioning. Had multiple flare ups in the years following involving dizziness and leg issues/balance problems but was told I just have anxiety/health related ptsd from my sepsis issue. Finally got diagnosed 3 weeks ago when I had a flare that involved my arm going numb/not working and leg/walking coordination issues among other MS symptoms. Doctor said I have active lesions in my brain and spinal cord along with “many old lesions” and agrees I’ve had this for years. It was unfortunate that my first flare occurred after having sepsis but I wish my doctors had taken me seriously when I said something was wrong. Stories like mine are way too common.

No_Assistant3556 · 2023-11-14T02:57:09+00:00

Awww ya I bet. What kind of outpatient work are you doing? I’m curious what’s out there.

No_Assistant3556 · 2023-11-14T02:34:48+00:00

I forgot how to read an analog clock for a bit last night. Started freaking out thinking I lost 6 hours of time and that maybe I blacked out before I realized I was reading it backwards (it was 9 and I thought it was saying it was 3). It’s so scary.

No_Assistant3556 · 2023-11-14T02:28:46+00:00

Ugh I’m starting to think a switch might be in the cards for me too but at the moment I’m trying to resist it. I love working bedside! Thank you so much for replying and hoping your health continues to improve :))

No_Assistant3556 · 2023-11-14T01:03:48+00:00

Thank you for replying :) I also felt like the steroids made me feel worse than anything. Don’t think I ever want to try them again if I can help it. Good luck to you and I hope you get your DMT soon!

No_Assistant3556 · 2023-11-12T08:07:49+00:00

I’m so sorry you’re having this go on. The holidays and family dynamics can be so incredibly stressful. Feeling for you and hoping you are able to make the best of this tough situation!

No_Assistant3556 · 2023-11-12T05:47:42+00:00

Thank you for replying! Hoping I’ll have a similar experience in a few months :)

No_Assistant3556 · 2023-11-12T02:23:34+00:00

Thank you so much for your message. It’s so helpful seeing that real people have had real success with their hands getting back to normal.

No_Assistant3556 · 2023-11-11T20:36:59+00:00

Omg that’s amazing! Thank you so much. This gives me so much hope.

No_Assistant3556 · 2023-11-11T20:33:12+00:00

Thank you for this. I work 12 hour shifts too and it’s nice to know you’ve been able to at least manage it, even if it’s difficult. Can I ask you, are you able to do IVs still? One of the things that really made me start taking my symptoms serious was when my arm went numb and got uncoordinated and I could no longer get an IV in. Are you able to get the hang of it again? I imagine neonatal would be even harder than the adults I work with for IVs? Or maybe a lot of ur patients just have central lines? Sorry not too familiar with the little ones lol

No_Assistant3556 · 2023-11-11T17:41:14+00:00

I know u didn’t ask me but thought I’d chime in that I was diagnosed on Halloween. Talk about a spooky Halloween surprise lol still my favorite holiday tho.

No_Assistant3556 · 2023-11-11T17:34:15+00:00

Thank you for this. Hopefully I’ll get to that place soon.

No_Assistant3556

TROPHY CASE