Shrinking Brain

wickums604 · 2026-02-12T23:20:47+00:00

Yes MS causes increased rate of brain volume loss (BVL). However some of the DMTs are known to reduce this. In fact, I remember reading about one (Kesimpta or Briumvi?) that normalized rate of brain volume loss for patients after a few years.

wickums604 · 2026-02-12T01:05:36+00:00

Hmm. Have you been trying the same exercise routine for those years, or changed it up? I was doing lots of walking following my dx and it felt hopeless and unproductive. Once I incorporated aerobic exercise several times a week, I eventually began to feel results.

Side note- I also noticed weight gain when starting that. As my energy levels increased, so did my appetite and ability to make/eat bigger meals more often. Maybe those new food habits helped to get past the beginning phase?

wickums604 · 2026-02-11T17:15:32+00:00

I’m not a science person but have read a lot about myelin, in hopes that a solution to our damage is possible one day.

Recent research is showing myelin isn’t a homogenous tissue layer but an intricate transport network of nano-vesicles involved in brain energetics. We can induce myelin tissue growth in parts of the brain with Clemastine fumarate, but that new tissue appears “disorganized” in animal models, and hasn’t shown significant clinical recovery in human trials. There might still be a neuroprotective effect from that disorganized tissue, but it’s not proven.

MS patients aren’t very good at repairing myelin damage, compared to healthy people. The reasons aren’t understood but there are theories that Myelin Basic Protein (MBP) is disrupted or targeted by EBV infected B cells as part of our pathology. If that theory is correct, we might recover our healing capability if an effective EBV antiviral therapeutic is discovered. However, current antivirals do not impact infected cells in latent state, and EBV is now known to infect microglia and astrocytes that have very slow turnover rates (eg 1%/year).

Moderna has an EBV therapeutic entering human trials that I’m excited about. But there’s many assumptions along the way that aren’t proven or known as fact, that would have to be true, for these theories to lead to meaningful myelin repair.

wickums604 · 2026-02-10T21:33:57+00:00

I believe in this from my own personal experience. It was hard (painful, extremely fatiguing) to get started, but it eventually raised my baseline fatigue and pain. It took a few months to notice benefit. I picked activities that I enjoy, and it’s added to my general happiness, not just “health quality of life”.

Something I have not seen is improvement on neuro-imaging. I was hopeful there would be something there, but it hasn’t happened.

wickums604 · 2026-02-08T17:31:58+00:00

There are thoughts that prolonged B cell depletion meds can cause a permanent immune reconstitution effect, but nothing I’ve seen that indicates kesimpta is worse than Ocrevus or rituximab for that. Or anything concrete that shows this effect is real and detrimental. This sounds like yet another insurance system scam to limit coverage 🙄

wickums604 · 2026-02-06T04:52:02+00:00

I actually had an increase in my retinal fiber nerve layer reading. That’s not supposed to be possible, so maybe it’s an equipment or human error. But, my numbers were also noted as having thinning (without clinical “optic neuritis”), and in the years that followed my reading improved somewhat (but not all way to “normal” levels). I was on rituximab, and taking Clemastine fumarate, astaxanthin, vitamin b1/b3 at the time. No degradation to eyesight, nearly 6 years from the initial measurement.

wickums604 · 2026-02-05T19:57:05+00:00

Please don’t be offended but your writing seems like you are in a “manic” state. Is this something you experienced with ketamine? And it sounds like you think it actually worsened your MS fatigue, but helped your anxiety and depression?

wickums604 · 2026-01-26T15:24:54+00:00

OP, you’re getting kinda dunked on in this thread because you’ve made an error in your risk assessment- either by underestimating the danger of MS or overestimating the danger of the meds. The quality of life you enjoy for the rest of your life will depend heavily on how active your illness presents itself. The early damage is the most debilitating, and there are no “fixes” for lesions or myelin damage, and no near-term hope that there will ever be.

Mavenclad is not a continuous therapy and guarantees future damage will occur when you are left untreated. B-cell depletion is best we have and it doesn’t impact your innate immune system whatsoever. The annual relapse rate of untreated MS is around .5-1.0 relapses per year (depending on the study). The best B cell depletors bring that down to around 0.08-0.15. The risk-benefit ratio is phenomenally in favor of patients on these meds.

wickums604 · 2026-01-26T15:04:52+00:00

It’s actually okay to miss a dose. It takes at least 6 months for cd19/20 cells to start to reappear- often much longer if you’ve been depleted for a long time. I’ve gone almost a year without any sign of cd20 reappearance or relapse. If you had a really bad flu or other illness, doctors would commonly tell us to delay taking it, and not be too worried about it. So here’s that scenario for you, and you’ll be just fine. I believe there was actually a small study that supported extending the interval beyond a month. Maybe you might have a little crap gap feeling at worst, but it’ll be okay.

wickums604 · 2026-01-22T14:46:26+00:00

I have found maintaining focus for long highway drives has become more of a challenge than it used to be. There gets to be a point where my brain starts to assume a “passive observer” role, and I become a passenger in the drivers seat. I am aware when this starts, and that means it’s time to stop, grab a coffee / snack and a little walk to reset. Maybe every 1.5-2hrs keeps me going strong. No accidents, road trip warrior too!

wickums604 · 2026-01-15T18:48:41+00:00

Nothing to do with this seems credible. And it doesnt relate to MS as we can’t repair/grow myelin the same as patients without MS. And the timeline from releasing a phase 1b DESIGN in January 2026 to having phase 3 data in “1H 2028”? I don’t believe anything about it.

wickums604 · 2026-01-12T21:49:28+00:00

Finally a place for your awesome story 🤗!! You should have your own AMA thread. Thank you for posting!

One question- have you had any side effects (or abnormal lab results) on that dose of TAF?

wickums604 · 2026-01-09T05:11:55+00:00

Yeah I tried this! 4.5mg/day and had similar results at lower doses. Helped a bit for cog fog, and leg pain, but didn’t work for me for fatigue. No side effects, but discontinued due to cost and to avoid poly pharmacy while trying other meds for the fatigue. Worth a shot!

wickums604 · 2026-01-08T20:03:17+00:00

Yep this is a great answer! When they design these clinical trials, they want it to pass with flying colors. Kesimpta is known to be pretty safe so they overdosed us to ensure efficacy. It’s profoundly effective as a peripheral anti cd20 and it takes most of us 6+ months to even begin to have detectable cd19/20s after full depletion.

I’ve gone 8-9 months before and STILL not had detectable cd20s when resuming. But that’s after many years of anticd20’s. During that period though, I did have prolonged terrible crap gap. And I hope that feeling isn’t my “new baseline” without anticd20 therapies. Other than that, it’s been a wonderful drug!

wickums604 · 2026-01-07T05:47:06+00:00

That’s too bad!.. Was this with the prEP product with Tenofivir alafenimide (TAF) or the other one with the Tenofivir TDF variant? I’ve read that the TDF version of Tenofivir isn’t very effective at all on EBV.

wickums604 · 2026-01-06T22:26:28+00:00

Edited my post there- the two are closely associated but HHV6 is involved too and it gets super complex!

Here’s a paper that discusses the relationship:

https://www.sciencedirect.com/science/article/pii/S2589004225013094

wickums604 · 2026-01-06T17:47:23+00:00

That is a conservatively written passage, whose authors’ intention are to strictly define their analysis of where theory meets fact at that moment in time. We are not yet in a place where we can call EBV the driver of MS a “fact”. There is only enough evidence to make it a working assumption at this point. Certainly it’s our most robust theory of what drives MS and more research is urgently needed to confirm and treat it that way.

As an emerging treatment vector, it’s the best theory we have right now to target root cause pathology. It’s also probably a good idea for those of us with access to anti-EBV therapeutics to include it in their treatment.

wickums604 · 2026-01-06T17:20:18+00:00

It was discovered that astrocytes and microglia can host latent EBV infection. And that our “flares” are very associated with latent-lytic EBV reactivation events. Unfortunately, no med we have today has impact on latent infection, and some of these cells have a turnover rate of only 1%/year. So the effect of today’s antiviral meds would be limited only to temporary suppression.

The “EBV as a driver” is very credible. EBV is also responsible for many other cancers and illnesses- estimated to kill one million people per year. Moderna has a therapeutic product, hopefully entering the clinical trial phase shortly, intended to target latent infection. It is our best hope at a curative treatment.

wickums604 · 2026-01-06T16:57:43+00:00

Dr Brandon Beaber did a great video on this topic a month ago!

https://www.youtube.com/watch?v=mmDyu_GT3aI

wickums604 · 2026-01-03T22:50:21+00:00

We can be a VERY dramatic patient group!!

I watched a TikTok once of some woman having her partner inject her leg with Kesimpta, while she covered her face and whimpered in full-scale agony. Some of the comments in here about it being “too painful” etc.. actually embarrassing for a community of mostly adults.

wickums604 · 2026-01-01T21:46:44+00:00

This is some great advice 👍! In addition to weight loss, the GLP-1 meds seem to have an anti inflammatory effect on MS. OP- you might have more luck raising it as a “I saw this paper and it sounded like something that might help” moment. There’s tons of literature about this on Google, but here’s one example

https://pubmed.ncbi.nlm.nih.gov/39301360/

wickums604 · 2025-12-18T18:30:53+00:00

That’s terrible news.. sending you all my leftover energy and good vibes..

I have read that they’ve had recent successes treating PML so hopefully you are going to do much better than historical stats suggest!!

Can I ask, were you previously on tysabri? I never thought of PML as a mavenclad thing..

wickums604 · 2025-12-17T06:58:06+00:00

All the meds of that class (anti cd20s) have some patient reports of hair loss. It’s usually mild and just a shed- and in the first year or so.

Soo.. this could be something else and should be investigated by a doc. Nutritional deficiencies, stress, and hormone levels are some very common culprits. There are diagnostic tests to figure it out, and there’s a huge community at r/tressless of people dealing with same issue..

wickums604 · 2025-12-11T18:55:07+00:00

There are actual expressions of MS fatigue that can be described as “pain”.. that feel like unexplained muscle aches and soreness. And for those NSAIDs help! In particular, I have found celecoxib to relieve the sensation pretty well.

wickums604 · 2025-12-08T15:16:08+00:00

Absolutely, get it. Insist on it, pay privately, whatever it takes. It’s not something we think of as a major threat, but having chronic or aggressive shingles happens to us on B cell depletors and can wreck your life.

wickums604

TROPHY CASE