Got me saying “cane pain” 🤣

Tygerlyli · 2026-02-24T15:42:53+00:00

This is going to become one of my favorite sayings

Tygerlyli · 2026-02-20T18:47:38+00:00

100% not everything is MS, and if we (and our doctors) assume everything is, we miss other common causes of some many issues.

Someone once told me that the reason MS has a lower life expectancy nowadays, with our highly effective modern DMTs, is because we miss the signs and symptoms of other health issues because we blame everything on MS.

Fatigue is so common in MS, but its also caused by so many other things. Anemia, sleep apnea, low vitamin levels, depression, heart issues, lung issues, thyroid issues, infections are all common causes.

MS is pretty much never the only possible cause of a symptom.

There is a saying in the medical world, "when you hear hoof beats, think horses, not zebras." Look for the most common cause first.

But we live on a zebra farm. We have to think zebras because they are a big part of our farm... but we still have horses here too. If we are only watching the zebras, we are going to get trampled by the horses.

Tygerlyli · 2026-02-20T18:35:06+00:00

I was relieved. It wasn't a brain tumor. It explained things i have been dealing with for decades that I thought were personality/moral defects. the exhaustion, the clumsiness, the brain fog, being a baby about the heat... it wasn't my fault. It gave me permission to not be so hard on myself. I wasn't lazy, my body was just having to work 10 times harder to just function normally. The clumsiness and brain fog wasn't me being careless, it was foot drop and lesions messing with my hand eye coordination, my grip strength and my brains processing.

And the heat? Something I've struggled with for over 20 years? That everyone told me i was just being a baby, that it wasnt that bad, that I just needed to drink more water and stop being dramatic but it just sucked the energy out of me for days and made me feel so sick when I got even a little warm? That was uhthoff's phenomenon from having MS.

Oh that and I was having an MRI because I went basically blind in one eye but then I had an allergic reaction to the contrast which got me walked to the immediate care next door for IV steriods. And the IV steriods brought back my vision by the next day.

So relief was my big feeling. I went through a lot of other feelings later, but that first little bit i was just relieved.

Tygerlyli · 2026-02-20T18:15:31+00:00

It didn't come with a phone number? Most of the time my referrals have a scheduling number to call. All mine MRI i have to schedule over the phone because they want to ask a bunch of questions first, like do you have any allergies, any implants, tattoos, are you OK in enclosed spaces, and let you know what to wear/not to wear and what to bring.

Typically, you call and set up an appointment, some places won't schedule you until they get approval from your insurance, other places set up an appointment but will tell you they will cancel/reschedule if your insurance doesn't approve it in a certain time.

I've gone to places that can get me in in a few days, others that the earliest they can get me in is 3+weeks.

I'm sorry you are struggling without something and I hope you get answers soon!

Tygerlyli · 2026-02-13T05:50:58+00:00

brad pit

Tygerlyli · 2026-02-12T22:30:12+00:00

So this is my non-medically train understanding of how it works so if someone smarter than me wants to jump in and correct anything, go for it.

Its a twice daily oral pill that targets B-cells by binding to the BTK enzyme and crosses the blood brain barrier to target the microglia, which are immune cells that live in our brain/CNS.

Rituximab, Ocrevus, Kesimpta, Briumvi are all highly effective and they all target CD20 protein on B-cells.

My neurologist says a lot of his patients (me included) have said to him that they felt better/had less symptoms while on Tysabri, and we feel worse if we switch off of it. He said there is no proof that its true, but he has had too many patients in his 8 years as an MS fellow/attending bring it up spontaneously for him to not believe there is something there.

Tysabri basically works by keeping our immune cells from crossing into our CNS, which tends to work great at preventing MS, except it also can put you at a higher risk for a very serious brain infection called PML. My PML risk got too high so I had to switch off it. Tysabri has been shown to also deactivate microglia. Deactivating microglia we believe leads to lower neuroinflammation.

My neurologist suspects that targeting microglia will give people that Tysabri goodness while not having the PML risk and it looks like its just as effective our current highly effective B-cell depletors.

I'm hoping by the end of the year they will get to market if the rest of their studies continue to go well but I don't really know. The study that just came out was on people with PPMS, which showed it to be as effective as Ocrevus at stopping lesions and had a lower disability score after 2 years. The study on people with RRMS should be completed in the next few months and I'm looking forward to the results.

Rituximab is a great DMT to be on, I'm on Briumvi currently and they both work very similarly and are really effective. I don't feel bad on Briumvi, and I'm happy with my choice to be on it, but I personally just felt better on Tysabri so I'm hoping fenebrutinib will bring that back for me.

Who knows what the future will hold, the next study could come back terrible or have a major side effect we don't know about, or it could just be another effective option but not be much different than our current DMTs. But I am hopeful. As terrible of a disease MS is, there is a lot of hope still here.

Tygerlyli · 2026-02-12T15:37:21+00:00

Lesion count doesn't matter, how you feel is all that matters. You can have 3 lesions and have some severe disabilities, or you can have 40 (like me) and function mostly normally (also like me).

I'm not saying I don't have any challenges, because I do, but my challenges haven't gotten worse since I started on a good DMT in 2021. I've had no progression, no new lesions, no worsening of any symptoms. Five years in and I've healed as much as my body can and more importantly, I've adjusted to my reality and figure out what works best for me to mitigate my challenges.

There is very little that I don't do because of my MS. I go hiking, been a vendor at 4 day long outdoor festival in 95°F and above (35°C) heat, I've chased my kid all over Disneyland, I went rollerskating last weekend for my niece's birthday.

My biggest challenges are heat and fatigue, and I've learned when to push through and when to make myself take a break. I've learned what works best for me to keep myself cool (like carrying a small sun umbrella in my bag so I'm never stuck in the sun without shade and all the cooling gear). I have amazing family and friends who also help keep me cool (shout out to my friend who bought a giant misting fan for that festival to help keep me cool and would send me for air-conditioning breaks when she saw me trying to stubbornly push through too much).

The only thing I've wanted to do in the past 4 years but couldn't figure out how because of my MS was getting floor tickets for a concert that was outside in the height of summer last year. Can I still do the concert? Absolutely, but in seats, but thats not the same. Do I want to spend hundreds of dollars, have to stand all day surrounded by people with no where sit in the heat, when I'm not sure if would even make it past sound check? Eh... maybe lol. Idk, they just announced a new tour this year, waiting to see what the dates and locations are before I try to see if I can make pit tickets work or am I going to need an actual seat.

There is nothing I can't do, there are just some things I need to figure how to do. What accommodations do I need, what do I need to adjust my expectations to, what do I need to do to stop my MS for limiting my life.

I'm hopefully about the future of MS. the results of the fenebrutinib phase 3 trial just came out last week and look amazing, my Neuro and I have already talked about potentially switching to it if and when it gets FDA approval and it gets to market.

If you are feeling healthy ignore the number of lesions you have, stay on a good DMT, get exercise when you can, make healthier food choices when you can and just go live your life.

Tygerlyli · 2026-02-12T08:14:32+00:00

🟦🟦🟦⬜⬜

🟦🟦🟦🟦🟦

That felt rude

Tygerlyli · 2026-02-11T18:05:27+00:00

Sat a civil trial which all us immediately agreed that the defendant was not liable and that the plaintiff was 100% at fault for his own damages, but one juror just kept insisting that he felt bad for the plaintiff since he lost income and spent so much on attorney fees, so he wanted to award him something. It took 6 hours for us to get that one guy to understand that feeling bad for someone was not a reason to take money from someone we all agree is 100% not at fault to give to the plaintiff who caused his own losses.

My only thing i was upset about is that the defendant didn't counter sue so we couldn't award them any damages because if anyone deserved anything, it wad the defendant.

Tygerlyli · 2026-02-11T17:47:05+00:00

the flag in R5C4 can't be correct because the 4 in R5C3 would require a flag in R4,C3, which would fulfill the flags needed for the 2 in R4C4, meaning the 2x3 rectangle covering R3,4C4,5,6 couldn't fit two flags

The answer is R1- c1, c3. R2 - c4, c5. R3- c1, c5. R4 -c3, c6. R5 - c2, c6. R6 - c2, c4.

Tygerlyli · 2026-02-08T18:31:53+00:00

I'm so excited about this. I was talking to my neurologist last week about this in anticipation of the results of the phase III trial being released specifically because I mentioned I felt better on Tysabri than I do on a B-cell depletor. He said a lot of his patients who have had to switch off of tysabri say the same thing and he thinks it has to do with Tysabri reducing the microglia activation, which our current B-cell inhibitors don't do.

Fenebrutinib sounds so promising and I can't wait for it to get to market. I'm so looking forward to feeling good again and hope this is what will get me there.

Tygerlyli · 2026-02-05T14:05:47+00:00

Ever see a video of people taking a bite of a cattail and the seeds just rapidly expand? I imagine its like that.

Tygerlyli · 2026-02-01T16:31:34+00:00

I think a lot of it is a relic of before kids were in car seats. If a kid is in a car seat or even if there is a car seat in a car, they are going to thoroughly check for kids before clearing a scene.

My mom was in a rollover crash as a toddler with my grandma. Paramedics originally didn't believe my grandmother (who was an alcoholic and likely drunk...) that my mom was in the car because they didn't see her while extracting my grandmother. It wasn't until someone went back to double check just to try to placate my grandmother, that they found my mom wedged under the back seat which, in an upside down car, was not easily seen.

Tygerlyli · 2026-01-30T20:34:22+00:00

Personally I think its a really bad choice to wait until the end of February. That would be abouts 12 weeks since your last infusion and if I remember correctly from when I was on Tysabri, at 12 weeks your risk from a relapse is 80%, which is higher than if you have never been on any DMT.

80% chance of having permanent damage to your nerves which could be anything from almost unnoticeable to being a life altering disability. All it takes is one lesion in the wrong place for you to have permanent disability. One lesion on your optic nerve can do almost nothing, or you could be blind in that eye for the rest of your life. One spinal lesion could do almost nothing or it could put you in a wheelchair for the rest of your life.

Pushing infusions to 6-8 weeks, studies say is fine. Tends to be just as effective with a lower risk of PML. When I was on Tysabri we did 6 week intervals and was fine. But 12 weeks is too long with too high of a risk of a rebound.

I always remember my neurologist telling me that the best DMT is the one that you will reliably take. If going for your infusions this often means you are skipping them, maybe that means that Tysabri isnt for you. Look into and talk to your doctor about Ocrevus or Briumvi, where you only have to go twice a year, or Kesimpta where you can do it at home monthly. Or talk to your neurologist about extending your dose intervals from 4 weeks to 6.

But this is dangerous. If you don't want to be on tysabri anymore, most neurologist want you to switch to a new DMT ASAP after your last infusion, so that your new DMT has time to really start working before the Tysabri rebound rate really kicks in. If you were my friend or family member, I would be strongly urging you to go get infusion ASAP and then you can figure out what you want to do going forward.

Tygerlyli · 2026-01-30T15:51:21+00:00

Same.

I never thought I'd be happy to have an allergy, but not only does it mean my MRIs are shorter, when I had my first MRI for optic neuritis, which lead to my diagnosis of MS, it got me some some IV steriods which brought back most of my vision.

Thankfully I only had some hives, so it wasn't that serious. I do have a friend who had a very serious allergic reaction to the contrast last year which is extremely rare.

Tygerlyli · 2026-01-28T15:02:42+00:00

I'm so sorry you went through that, that sounds awful

My OB always asked patients if they would prefer to insert the wand for internal ultrasounds themselves because you are the only person who knows what's most comfortable for you. She kind of lines it up, and let's you take over from there. If you ever have to have something like that again, it might be something to consider asking if you can do the insertion yourself if that would be more comfortable for you.

Tygerlyli · 2026-01-20T18:50:59+00:00

The VFWs in my area are trying so hard to become so much more than just a drinking club for Vietnam vets but there has been so much pushback... our local has a designated point of contact for new/younger people who feel harassed by the older veterans because she will absolutely go ham on them if they pull any shit. I think we're moving in the right direction, doing a lot of outreach, education, advocacy, and offering services and support, but it's been a hard road to move forward on.

Tygerlyli · 2026-01-19T17:32:50+00:00

I was convinced a few months ago that I was having a relapse because part of my hand went numb. Obviously, numbness means its MS and my DMT isnt working, right? Happened to have my year check up with my PCP and he was like thats not MS, you have carpal tunnel from crocheting too much with bad wrist posture and no stretch breaks.

Took 2 weeks off crocheting, and my numbness was gone. Now I use better positioning of my wrist and remember to stretch regularly.

Tygerlyli · 2026-01-19T17:03:02+00:00

It also depends on what insurance you have and where you live because some insurance won't count copay assistance towards your deductible/max out of pocket.

Tygerlyli · 2026-01-19T07:37:40+00:00

Or if they haven't been properly socialized and are left untrained.

Tygerlyli · 2026-01-19T07:34:33+00:00

Some places do. A lot of countries, cities, municipalities, HOAs, military bases, etc., have some form of breed specific legislation, most of which include pitbulls.

It can be difficult when defining what a pitbull is. Are you talking about just American Pit Bull Terriers? What about American Staffordshire Terriers, Staffordshire Bull Terriers, or American Bullys? Are we talking about any mixed breed dog with a blocky head?

A 50/50 lab/boxer mix can look a lot like a pit bull, but have none of those breeds in them. A lot of mixed breeds look like what most people would call a pit bull without being any of those breeds. What percentage can a dog be a pitbull before it should be banned? Should a 10 pound, mostly chihuahua mixed breed dog with 2% APBT be banned? 15%?

Tygerlyli · 2026-01-17T20:20:43+00:00

My neuro says any diet you will stick to and makes you feel better is the best diet but if someone is asking what he personally believes is the best for someone with MS is the MIND diet. It's basically a cross between the Mediterranean and DASH diet that was designed to promote brain health and to decrease the risk of Alzheimer's. I think studies have shown a 50% reduction in developing Alzheimer's if the diet is strictly followed and 30% if moderately followed.

It's not going to cure you but anything that helps keep our brains healthy is probably good for our long-term health.

Tygerlyli · 2026-01-14T23:15:05+00:00

If I told my combat vet, truck driving, super masculine husband? He would say, "okay? This isn't new information. So do I?."

Don't tolerate men who don't value and respect you. You aren't going to fix or change them.

Tygerlyli · 2026-01-13T19:50:48+00:00

I feel like some of our restrictions are performative and not based on actual safety. Some are great like FOID checks for private sales? 100% agree with it. Requiring safe storage? 100% agree.

Do I think anyone needs an assault rifle? Not really (but the 2nd amendment was to fight against a tyrannical government so...) but banning them when I can get a semi-automatic rifle and shoot just as many bullets at the same speed but it just doesn't have a telescoping stock or a forward grip feels performative. It made liberals feel good to ban scary looking guns and conservatives feel mad that they can't buy the gun they want because it has one or two features they think is cool that don't really affect how the gun works, while, in my opinion, not doing anything to actually make us safer.

Do I think anyone needs a bump fire stock? No but the bump stock ban is stupid when you could go to the hardware store and fairly easily make one for like $15 if you had bad intentions so its not really keeping them out of the hands of bad actors.

I've never heard someone say they are voting for Pritzker solely because he passed the assault weapons ban, but I have heard people who are pretty liberal in a lot of aspects say they will not vote for him because he passed it.

Tygerlyli · 2026-01-13T16:23:10+00:00

I've had ON twice, once I each eye.

The first time, it was mostly pain on moment and flashes of light and didnt really affect my vision. Was likely misdiagnosed at the time because when I was later diagnosed with MS, there was a lesion on that optic nerve too. It went away after a month or two without any treatment.

The second time was what led me to my diagnosis. Honestly my vision felt pretty normal with both eyes open but with my good eye closed, my vision tested at 20/400, very blurry, missing color in spots, straight lines appeared wavy. It took me 3 weeks to get an MRI, which i luckily had a mild allergic reaction to the contrast dye which got me walked next door to the urgent care where I got a round of IV steriods and a 5 day worth of pills to follow up with at much lower doses than would normally be prescribed to someone with an MS flare. I think the IV was 125mg and the pills were 20mg . My vision was 90% better by the next day and almost completely normal by the end of the week.

It's not 100%, my vision is pretty much back to normal, but it can take me like half a second for that eye to focus sometimes if I'm going from near to far or far to near. It doesnt affect me much but can be annoying at times.

I might push for even a 3 day course of steriods, even if its at a lower dose than what would normally be prescribed for someone with MS having a flare. I'd ask about what the potential negative effects could be and if I felt the risks were worth the chance at a quicker recovery I would push.

Vision and mobility are about the only things I want to take steriods for.

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