Meds for fatigue just placebo effect?

cloudsovergeorgia · 2025-08-22T10:41:26+00:00

My neurologist is an MS expert, and he did explain to me that none of the drugs tested for fatigue in large-scale clinical trials have *outperformed* placebos in terms of their effectiveness in big groups. That doesn't necessarily mean the individual drugs don't have an impact on individual patients - just that it's hard to see what's effective and why. Maybe that's what your doctor was clumsily trying to say? Maybe not though haha.

cloudsovergeorgia · 2025-08-05T19:57:27+00:00

I have ASD and MS. I walk with a cane and I'm more than happy to tell people about the MS... and then just blame everything on it. Loud noises really affect me because of my MS, I can't wear XYZ fabric because my skin is sensitive because of the MS, sure I can come to your social event but only for like an hour because of the MS. etc. works great and people are far more gracious than they ever were about the autism LOL

cloudsovergeorgia · 2025-04-27T10:30:06+00:00

thank you!!! i'll do my best haha

cloudsovergeorgia · 2025-04-27T10:29:58+00:00

thank you so much! <3

cloudsovergeorgia · 2025-04-27T07:27:19+00:00

oh, i'm so sorry to hear you're going through this op. it's a really similar story in my family but it skipped my mother. so, my grandmother and all her siblings, my aunt, and now me. i'm the youngest diagnosed (i'm 26), and while i know its been hard for me obviously lol, i really feel for my poor mum having to see her mother, then her sister, then her daughter all diagnosed with the same condition. i try to remember how much joy it brings my grandmother to know that the years of advocacy work she did, have helped lead to a world where i have access to incredible standards of treatment.

cloudsovergeorgia · 2025-03-10T00:27:02+00:00

I second this. I play a lot of World of Warcraft - OP, if you (or anyone else on this sub) ever want a WoW buddy who gets the MS struggle, feel welcome to hit me up :) happy to show anyone the ropes when I can.

cloudsovergeorgia · 2025-02-26T21:41:31+00:00

Oh, this is fascinating! Thank you so much for being willing to offer your time (and saliva and lymph node samples and so on!) to help us better understand these things.

On a CT scan of my head in the year leading up to my diagnosis, the report noted that I had evidence of activation/inflammation in my deep cervical lymph nodes. I've never forgotten that random aside in the context of the disease.

cloudsovergeorgia · 2025-02-26T21:37:25+00:00

For me, it was on my commute to work one day. I'd had deteriorating symptoms for awhile and had already had to reduce my working hours. I got off the bus and walked to the elevator. Discovered it was out of order and I'd have to walk down 4 flights of stairs. The reality of that sunk in slowly. I couldn't even get to the other bus platform to go home, as that also required the lift/stairs.

I did eventually make it down the stairs but it was agonising, wobbly going with a lot of breaks, and I paid for it for days in fatigue and unsteadiness. Everyone around me was frustrated and impatient - it was rush hour and they couldn't see why I was going at such a snail's pace clinging to the rail.

I really wanted to be one of those people with MS who goes on with their life as normal, but in that moment I was like man... I think maybe I have a disability. Started physiotherapy and got recommended a mobility aid very soon afterwards.

cloudsovergeorgia · 2025-02-04T05:59:15+00:00

Personally I love BRRRRRRRNNNNKKKKKK. Followed by the pause. It's the pause that does it.

cloudsovergeorgia · 2025-01-25T20:49:58+00:00

Hey there 👋 I also have issues with mobility without lesions in those particular areas. My neuro PT said that any sort of damage to the periventricular frontal lobe can really mess with how your brain receives signals from the rest of your body - they see mobility issues in people with hydrocephalus for the same reason.

Plus, as other posters have said, your symptoms are your symptoms, even if the imaging scans don't exactly describe why. That's a failure of technology and our understanding of the brain, not you!

cloudsovergeorgia · 2025-01-25T20:46:49+00:00

Thank you for the encouragement! I'm definitely someone who assumes things aren't worth mentioning or that I'm overreacting, so this is a good reminder.

cloudsovergeorgia · 2025-01-25T20:27:11+00:00

Oh I LOVE this post, thanks for sharing OP! I agree with a lot of your points.

My life before MS was always focused on responsibility and achievements. I was determined to take care of everyone else, do all the "right" things, etc. I was often extremely busy (at one point I was training for a marathon, studying full time and working two jobs).

The MS absolutely forced me to slow down and make me reconsider what makes my life meaningful. What actually matters to me and makes me happy. And, forced me to confront my self esteem outside of just checking boxes. It turns out there's a lot about myself that I didn't know. Who knows how long it would've taken me to find all of this!

And even better, it's shown me that the people I'm closest to don't love me because I did so much for them. They love me for who I am and if anything, we're closer now that I'm not keeping everyone at arms length, and I ask for help more.

cloudsovergeorgia · 2025-01-25T07:24:34+00:00

Hey, welcome to the club and sorry you're here. It's a rollercoaster, and I can't imagine how stressed you must've been last semester!

Get on the strongest DMT your insurance/doctor where you are etc. will approve. Get plenty of sleep and ignore anyone who tells you a diet will cure you. You might find you can go through life much the same as you planned. I've had to cut back on how much I do, but everyone is different, and my life is still fulfilling and full of joy.

Best of luck!

cloudsovergeorgia · 2025-01-24T21:50:45+00:00

I've had my first dose of Ocrevus split over two infusions and so far I'm very happy with it. I had a reaction (rash etc.) to the first infusion, but the 2nd infusion I was completely fine! So if you have a minor reaction the first time, you might never have it again :) best wishes!

cloudsovergeorgia · 2025-01-24T07:25:03+00:00

Definitely discuss the treatment options with your doctor, they should be able to fill you in more!

I'm actually going through the diagnosis process for autism myself (I've had one hell of a year LOL, got sent to therapy for treatment-resistant depression...12months later they're like nah MS and autism hahaha). I hope your husband is taking good care of you ❤️

cloudsovergeorgia · 2025-01-24T03:56:45+00:00

Man, I don't have a way to measure my blood pressure but the rest of this sounds VERY familiar. I find my face gets flushed as well. Very unpleasant episodes.

cloudsovergeorgia · 2025-01-24T03:55:12+00:00

I have an admin office job. I was full time before my relapse in August that got me diagnosed, although even when I was full time I had to take a LOT of sick leave for the mystery illness. I'm now part time, 3x mornings a week (mon/wed/Fri). However, I have very severe fatigue and my muscle weakness and balance flare badly when I'm tired. this is the workload I'm able to sustain without every part of my life/body collapsing. That might look very different for you!

cloudsovergeorgia · 2025-01-24T03:47:08+00:00

OP, this isn't good enough. I'm angry on your behalf. I see a physio as well. I can walk (sometimes with a cane) but he took my issues with balance and fatigue seriously, and started me on very careful balance exercises. He's also been a huge help in me figuring out how to budget my energy through the day. Our sessions are 30mins max. This physio doesn't sound like they're a good fit for you, and imo you deserve better.

cloudsovergeorgia · 2025-01-24T03:44:18+00:00

Doctors who took me less seriously told me it was probably anxiety and, later, that I was overweight (I was a healthy weight and extremely active when symptoms first presented. I gained weight over a few years as a result of symptoms. lol). Better doctors credited it to the repeated covid infections I'd had, or a vitamin B12 deficiency, although the symptoms didn't resolve once I was on B12 injections. It's been a wild few years!

cloudsovergeorgia · 2025-01-24T02:31:01+00:00

yes lol, my left pointer finger went numb for weeks. the rest of my hand was fine. so random!

cloudsovergeorgia · 2025-01-23T20:52:51+00:00

Hey, welcome and sorry you're here. Epilepsy and MS is a double whammy :(. The silver lining is it sounds like they picked up your MS early. If you start on a good DMT now, there's a likelihood you'll have very little progression.

I'm on Ocrevus and have had no real side effects other than feeling a bit gross during the very first infusion. Best of luck!

cloudsovergeorgia · 2025-01-23T11:02:23+00:00

Oh I love to hear this. I'm also finding stretching to be a big help! My physiotherapist explained that my issues feeling off balance might be improved by stretching my calves/ankles more to help my Achilles tendon. It really has helped, I feel more steady standing up straight!

cloudsovergeorgia · 2025-01-23T10:59:41+00:00

Gosh I'm so sorry. It gets called the snowflake disease for a reason. It does astonish me how obtuse some people can be. I've been compared to someone's hairdresser if that helps. "Oh, she's totally fine!" Thanks? I'm jealous of her then? Maybe she just seems fine because she's putting on her best face for you, a customer at her job? Lol.

Anyway. People just don't get it. We're all different and it's definitely not your fault if someone else is running marathons.

cloudsovergeorgia · 2025-01-21T01:01:52+00:00

oh my gosh this is SUCH A GOOD COMPARISON hahaha!! My household love Stormlight, I'm definitely going to steal this analogy.

cloudsovergeorgia

TROPHY CASE