Current Events > Multiple Sclerosis can really mess with your mind.

(+) Yeah! (+)

Having to come to terms with not being as sharp as i use to be, and this shit has caused me to lose a step.

The basics of M.S. is your immune system attacks the cords in your nervous system which is why it can handicap someone in so many ways. As of this writing i can still walk, run, and maintain my balance after being formally diagnosed a decade and a half ago. ( only other thing was losing feeling on the right side of my body which allowed me to catch it early, and that feeling came back after starting treatment) However, those attacks have left lesions in my brain...Above the average of someone without it.

It's freaky really...always had trouble with people's names, and directions when i was younger, but i'm in that in between where i am aware of just how slow i process some formation, or retain memory to not misplace things.

Not making this to bitch, and moan but rather say if you have a family member who has it keep in mind it can be embarrassing to admit to memory issues, or not being as quick with things, so lay off, and don't be a jerk. May live alone, but damned if I said i did everything on my own.

You live long enough life will teach you how to work around it. Make no mistake about it I'm one of the lucky ones.

Nintendo_Porn posted...

Make no mistake about it I'm one of the lucky ones.

My wife has MS. And she's lucky because it's relapsing-remitting, not secondary-progressive.

Hey, man. I understand. I've had memory issues ever since my traumatic brain injury in 2003. It's embarrassing sometimes, but I've gotten used to making notes and setting reminders. Cel phone reminders really help.

Vampire_Chicken posted...

My wife has MS. And she's lucky because it's relapsing-remitting, not secondary-progressive.

Yeah, my Mom has secondary-progressive. She's immobile and largely bedridden now, she was diagnosed about 20 years ago.

COVxy posted...

Yeah, my Mom has secondary-progressive. She's immobile and largely bedridden now, she was diagnosed about 20 years ago.

I'm sorry to hear that, COVxy.

One of the depressing things about relapsing-remitting is the knowledge that even if you go into remission, if you have enough severe and frequent relapses over time, the damage is done and will become more and more lasting when there are no longer enough unscarred neural pathways to reroute the signals efficiently. My wife had a brainstem relapse 12 years ago which left her with permanent cervical dystonia that's only mitigated by having botulinum injections every three months.

I have an aunt and uncle who have MS. My aunt has had it for what has to be 30 years now. She's a chainsmoking alcoholic, but she has always taken her treatments seriously and keeps it well managed. If it weren't for the insane alcoholism she'd be living a pretty normal life.

My uncle, got diagnosed probably 15 years ago. Despite his sister trying to insist how important it was to manage, something she had been doing successfully for 15 years, he basically ignored her and pretended everything was fine. He is now completely immobilized and can do little beyond watch TV and needs a full time caregiver.

It's scary shit.

Oh my God, TC. I have it too. And combined with adult ADHD, it makes it SUPREMELY difficult to keep a job.

If you ever want to talk, PM me. We can also smash in the smash topic lol.

I've been diagnosed for 7 years, but symptomatic for over 15.

I have been blessed to have had only one new lesion in 3 years. And I am still so high functioning, almost no one would know without me telling then.

It's STILL HARD, goddammit.

dj1200 posted...

Hey, man. I understand. I've had memory issues ever since my traumatic brain injury in 2003. It's embarrassing sometimes, but I've gotten used to making notes and setting reminders. Cel phone reminders really help.

Feel you. I have so many reminders on my phone, but luckily they usually are a plan B. I locked my routine down.

Vampire_Chicken posted...

I'm sorry to hear that, COVxy.

One of the depressing things about relapsing-remitting is the knowledge that things won't always "go away": even if you go into remission, if you have enough severe and frequent relapses over time the damage will be done and will become more and more lasting when there are no longer enough unscarred neural pathways to reroute the signals efficiently. My wife had a brainstem relapse 12 years ago which left her with permanent cervical dystonia that's only mitigated by having botulinum injections every three months.

Reminds me i did have another symptom which caused me to need to switch treatment. Years back my vision dimmed to the point i couldn't tell red from green. Luckily introverted, so wasn't crossing streets during that time, but it's off putting.

It's good you guys/gals support your spouses - only wish my parents didn't take the pretend nothing is wrong route. I bet that still can't spell it. >_>

But thanks for sharing guys because sometimes you need a reminder it could be way worse. I can't imagine possibly being rendered immobile one day, but i'll be grateful for how things are now.

[LFAQs-redacted-quote]


I've had 3 since diagnosis though i am a cord cutter, so you might not know these.

• BETA SERON - basically you shot yourself with an injection gun every other day in the arm, but, stomach, or leg.
• Gilenya - it was just a pill every day, but i guess that one pill worked too well, and destroyed my immune system altogether. Still was better than shots, and introverts don't have to worry about getting sick from outside.
• ocrevus - every 6 months i sit in infusion for a few hours with an iv injecting medicine which kills the immune cells attacking your nerve links. Best of both worlds so far.

My mom had it. She passed away at 33. She couldn't walk after 25, and was legally blind at 23ish. She basically needed around the clock care.

I'm a full time carer for a man with MS, it's a fucked up thing. I don't even like talking about it to people who haven't experienced what it's like. My heart goes out to you TC

Lemtrada is the medication I am currently using.

Damn, does that shit work. However, two or more medications have to fail to work before a neurologist will suggest it.

Tecfidera actually gave me MORE LESIONS

Sorry all of you have this and have to go through it

haloiscoolisbak posted...

I'm a full time carer for a man with MS, it's a fucked up thing. I don't even like talking about it to people who haven't experienced what it's like. My heart goes out to you TC

Thanks, dude. And my heart goes out to all who shared their stories. Comforting to remember i'm not alone in this.

EyeWontBeFooled posted...

Lemtrada is the medication I am currently using.

Damn, does that shit work. However, two or more medications have to fail to work before a neurologist will suggest it.

Tecfidera actually gave me MORE LESIONS

Sure, i'll smash with you anytime. *pause*

Would have freaked if the neurologist told me i got more off treatment. Lemtrada sounds like the good shit!

Nintendo_Porn posted...

Thanks, dude. And my heart goes out to all who shared their stories. Comforting to remember i'm not alone in this.

Sure, i'll smash with you anytime. *pause*

Would have freaked if the neurologist told me i got more off treatment. Lemtrada sounds like the good shit!

Lemtrada was originally developed as a leukemia treatment.

It's an IV infusion drug that is essentially chemical chemotherapy. It wipes. You. Out. So, you need nurses checking on you for 8 hours a day for 5 days.

When I got on it, the drug was not long past human trials. It isn't cheap! Like 12,000 CAD. Per day. For 8 days over two year.

The US cost? 30,000 USD per day. Same thing.

But because Saskatchewan, Canada has the most MS patients per capita in the entire world, there are many resources to take advantage of.

I got on compassionate care, and I will likely never see a bill.

It also helps that my neurologist is the head of MS research at the Univ. of Saskatchewan! Dr. Michael Levin. The rock star neuro lmao. The kind that makes the ladies at the support groups go: YOU HAVE DR. LEVIN!?

Insurance rules...feel terrible for those who can't get it. Another reason you better off not making too much in america.

Women with MS outnumber us dudes with it at least 2 to 1. The only good thing about MS is that is has increased my dating pool lmao.

Hope you all had a good Valentines Day!

My cousin has MS. It was like last weekend she was out dancing in the clubs and bar hopping back then. I thought she got into an accident and asked if shes okay. She told me she has MS. My heart sank that day for her. our big family is so supportive for her. There are times she tired but she always makes the family parties. Every day some times feels is gettin better though. Seems like shes not too tired as much.

Shes on her 30s and needs help walking now. The cane has helped her for all these years but... she has to hold our arms now for balance with her cane. We tell her to take her time but she doesnt want us to wait for her. She never holds us back when we go somewhere.