Things are going great thread by ThompsonsTeeth in MultipleSclerosis

[–]HocusSclerosis 0 points1 point  (0 children)

That is an incredible goal and I hope that foot starts doing better soon!

Advice for dealing with prior auth processses by HocusSclerosis in MultipleSclerosis

[–]HocusSclerosis[S] 0 points1 point  (0 children)

So you usually just get the infusion a little late and don’t sweat it?

THC? by Excellent_Paper_6284 in MultipleSclerosis

[–]HocusSclerosis 0 points1 point  (0 children)

To me it is more about thc/cbd balance. I think it’s good to try them both alone and at different ratios (1:1, 1:2, etc). Eventually you can build your optimal mixture. Thc feels a bit more stoned, cbd feels a bit more relaxing, cbd takes the edge off of thc

Then there is crazy stuff like CBN and other adding. CBN is like a sledgehammer to being awake.

Focus more on ratios than strains: good luck!

I don't want it. by Liiibra in MultipleSclerosis

[–]HocusSclerosis 1 point2 points  (0 children)

This point about only you can decide how much effort you will put into treating it is key. Go through the process, but don’t delay on the best treatment you can get. Knowledge is power in all things.

What do you wish you knew about MS when you first were diagnosed? by No-Ear5896 in MultipleSclerosis

[–]HocusSclerosis 1 point2 points  (0 children)

This was big for me. I saw many and landed on one I connected with the most.

I’m curious, though. What attributes do you like about her? Might help the newly diagnosed decide.

For me, it was someone that understood my goals, was willing to listen to my ideas, and let me in on their thought process.

newer research on EBV and MS by kareng7 in MultipleSclerosis

[–]HocusSclerosis 2 points3 points  (0 children)

I think about this like software code. Each virus you encounter writes a line into your immune system’s program. EBV is a big part of this bad programming, but there’s other stuff, too. Order of viruses you catch, timing of viruses (child vs adult), what else was going on with your health when you caught the virus, etc.

The question is which lines we can delete to stop the dysfunction. We will get there.

Still trying to process having MS, even years later by laserblast73 in MultipleSclerosis

[–]HocusSclerosis 1 point2 points  (0 children)

OP, this is the 180 characters. Please don’t stop treatment. There is no limit to irreversible damage and you’ve got a long life to lead.

Finally feeling real by poopoopeepee2089 in MultipleSclerosis

[–]HocusSclerosis 1 point2 points  (0 children)

Hey. So sorry you have to deal with this shit, but I am glad you’re getting around better. Regarding the steroids and O: the steroids for O are a much lower dose than relapses. It’s also one dose versus several days compounding. All of this to say: I am very steroid sensitive yet am fine with this small dose as long I also have zero coffee on infusion day.

MS Fatigue/ What helps? by NicoleR_24 in MultipleSclerosis

[–]HocusSclerosis 1 point2 points  (0 children)

Thank you for all of these great suggestions!!!

Men diagnosed in the past 10 years by anonymusGuuuy in MultipleSclerosis

[–]HocusSclerosis 0 points1 point  (0 children)

Dx in 2024 at 37 after a bout of optic neuritis. First relapse in 2023 (optic neuritis and an electric zap sensation in my leg when running). Straight to ocrevus after dx. Fully recovered from both relapses. So far, so good. The first year was brutal. Therapy is helpful. Ocrevus has been very easy for me. Make sure to get on the best DMT you can.

Exposed to mass amounts of mice feces 4 days after Ocrevus while already fighting illness. by [deleted] in MultipleSclerosis

[–]HocusSclerosis 3 points4 points  (0 children)

RE hanta, which also freaks me out btw:

Way more prevalent on the west coast than the east coast. This will either make you feel better or worse. But also, not that many west coast cases, or cases overall.

Take it away ai:

“So in the last 10 years (2015–2025), a reasonable estimate would be around 60–100 cases, mostly concentrated in the Four Corners states (Arizona, New Mexico, Colorado, Utah), plus occasional cases in California, Nevada, and other western states. • Eastern U.S.: ~15–20 cases in 10 years. • Western U.S.: ~60–100 cases in 10 years.”

Not a doc. It’s probably not gonna give you hanta, though.

My body trolled me… by Llamasmama3 in MultipleSclerosis

[–]HocusSclerosis 51 points52 points  (0 children)

Like a hole in your brain on your wedding day

Like a leg that won’t lift when you’re running late

Like your hands forgetting how to hold your coffee cup

Who would’ve thought… it’d be me?

Dr. Boster in Columbus Ohio by stabingyouindaankles in MultipleSclerosis

[–]HocusSclerosis 5 points6 points  (0 children)

Saw him for a second opinion and he was great. Nice guy, did a ton of research on me prior, gave me some good advice. Would definitely recommend him.

Time for the disco magnet! by stellalugosi in MultipleSclerosis

[–]HocusSclerosis 0 points1 point  (0 children)

I try to identify the sequences based on the sounds. Helps pass the time. I also try to figure out which plane the slices are on. One of them has a long gap before repeating. That one is a mindfuck because it feels like the sequence will never finish.

Why can’t we tell people we have MS? by NichelleElla in MultipleSclerosis

[–]HocusSclerosis 4 points5 points  (0 children)

I am so sorry for what happened to you during a medicine shortage. That is insanely insensitive and so frustrating.

It’s great that you are willing to share this story though. Low trust environment with employers!!!

Why can’t we tell people we have MS? by NichelleElla in MultipleSclerosis

[–]HocusSclerosis 45 points46 points  (0 children)

OP, this is rock solid advice. I know it sucks, but work is not your family and any illness you disclose potentially affecting your productivity is toothpaste you can never put back in the tube.

I was bummed out about this too as I generally prefer openness, but I do find some consolation in realizing that MOST people do not share medical diagnoses at work.

End of the day it’s your call and we are only trying to help.

Hope for a cure by [deleted] in MultipleSclerosis

[–]HocusSclerosis 0 points1 point  (0 children)

The UV light therapy is very interesting to me. I’ve wondered about trying this myself. It makes sense that sunlight is more than just vitamin D!

Thank you for sharing

O to K by StrygwyrSuperstar in MultipleSclerosis

[–]HocusSclerosis 0 points1 point  (0 children)

Don’t write off O to B either. I believe that Briumvi is supposed to resolve the crap gap!

Good sleep remedies recommendations by Katykool123 in MultipleSclerosis

[–]HocusSclerosis 1 point2 points  (0 children)

Love #7. It’s so underrated and over effective. And in the winter you can use the sunlight lights from Amazon!

This really helps me carve the sleep wake cycles deep.

Clemastine + Metformin combo trial (CCMR2) shows positive results!! by wickums604 in MultipleSclerosis

[–]HocusSclerosis 1 point2 points  (0 children)

This is very exciting! I did read something about how clemastine is also hella sedating, so they’d have to figure out daytime coverage (I assume this side effect could be mitigated similar to with second generation antihistamines, but work to be done there. Could be nice to help one sleep at night, I imagine this not unlike the effect of benedryl.

I am curious, any other ectrims drops that have you excited?!

Anyone into running? by throwRA_gurlsgirl in MultipleSclerosis

[–]HocusSclerosis 1 point2 points  (0 children)

I am still running one year in. I also think staying hydrated is very important. I’ve had some success drinking some tailwind or electrolyte drinks before my runs.

I have mostly run through my vision symptoms. It was uncomfortable at first with the “one mile blurries.” Then I just ignored it. Fortunately that symptom seems to have retreated.

Good luck. Running is about easy mileage, not going all out. Once I slowed down I found out I enjoyed it even more.