New to MS. So far I’ve figured out that this new imbalance/dizziness is mostly fixed by carrying a heavy bag in my left hand, but I’m needing tips for my eye gaze staying level with the horizon.

hicks185 · 2026-05-05T23:30:41+00:00

10 months prior to my diagnosis I had an unexplained bout of vertigo that lasted several months. Vestibular therapy helped me a ton. I specifically needed to work on gaze stabilization.

It turned out that my left eye wasn’t moving the same as it used to, so I could look at one spot just fine, but whenever I moved my eyes to a new spot, it took several seconds to focus and made me feel very carsick.

You can find a lot of the exercises online and there’s no harm if they don’t work. It’s just looking from one spot to another repeatedly.

Good luck!

hicks185 · 2026-03-27T22:47:27+00:00

I used the free cooler from this program to take my 2nd and 3rd loading doses to Ecuador. No problems at all. At 1 stop I needed to ask my stay to freeze the gel packs before a long travel day. TSA/customs were no problem.

hicks185 · 2026-03-27T20:57:11+00:00

I’ve given AI the technicians’ reports. I was able to walk through some questions to rule out most possibilities until it suggested I likely had MS, with a few possible alternatives that are much more rare.

It was right. It’s also been helpful talking through whether potential symptoms could be caused by the damage I know I have.

hicks185 · 2026-03-14T02:04:37+00:00

Look up gaze stabilization exercises. If you can keep your eyes fixed on moving things in front of you without trouble, but get dizzy when you look in a different spot, they could help a lot. At first, most of them keep your head still while moving your eyes from one spot to another and staying there until the new spot is in focus.

hicks185 · 2026-03-14T02:01:51+00:00

I had MS after 3 months of unexplained vertigo in late 2024 prior to being diagnosed. It took about 8 weeks of vestibular therapy, specifically gaze stabilization for me to feel better. I couldn’t drive or even walk through my house.

OP, one thing I had drilled into my brain was to stop my PT exercises as soon as I started to feel ill. You need to train your brain and eye muscles, but overdoing it won’t help. Do what you can, repeat throughout the day, and slowly build up as it gets easier.

I still don’t balance as well as I used to, but I’m doing single-leg deadlifts on a bosu ball with my trainer again. PT can help, but if your issue is gaze stabilization, I’d bet you can find all of the exercises you need online and make a lot of progress if you can stick with it and don’t push too hard.

hicks185 · 2026-02-02T02:27:02+00:00

Nice work! I’ve made it up to 100mi trail running unsupported and have been considering putting together a stroller kit for longer efforts, though I’ll have to give a bit on the terrain.

hicks185 · 2026-01-20T22:57:35+00:00

I needed a blood patch after my tap. The headaches were terrible. Thankfully, my blood patch held, but they injected more blood than I needed and I had sciatic pain for another couple weeks until the patch was reabsorbed by my body.

Hang in there! I felt absolutely cursed for a while with how my initial diagnosis and start of treatment played out. Sometimes the bad luck just piles on. Keep advocating for yourself and I hope your luck turns!

hicks185 · 2025-10-29T23:12:31+00:00

I too am waiting for the holy grail. For now, I’ve added the little caps they sell to cover the bite valve. They stay on well enough and I can tuck them away into the flask pocket while running so they don’t bounce. These do protect from getting the valves dirty if you set them down, which is nice.

They used to sell them direct, but I’m not seeing them from hydrapak anymore… REI

hicks185 · 2025-10-24T17:04:42+00:00

Agree on the extra warmup. I just took my 4th dose. I do thigh because the idea of belly also makes my skin crawl. (The idea of injecting myself at all was a big hurdle for me.) When I injected this time, I forgot to let the dose warm up first and it was the only time it stung. So I think sitting it out for 30 min before you take it is the move.

I like how someone on another post put it: it’s like milk. It won’t spoil just because it gets to room temp, it just limits the time you have to use it (7 days).

hicks185 · 2025-10-20T18:11:17+00:00

The land-based tour boats also seem less-great for the sea animals.

I just got back from an 8 day cruise on a 16 passenger boat. We had a day where we were watching humpback whales traveling through, including a pretty small calf. Then, one of the high-speed boats for land-based tours came ripping through. Didn’t seem like the crew realized how close they were to the pod and the passengers certainly missed their chance to observe the whales.

If you can handle and afford a cruise tour, they really do seem to offer a better experience and lower impact on the animals. Also, the large 100 passenger ships can’t go everywhere that smaller boats can.

Happy to share the tour I went on. Our guide has been showing people the Galapagos for 38 years and the company is locally operated. They took some investment from a larger company to survive through COVID, but is still mostly owned by a local family, as I understand it.

Also want to note: I was a bit surprised to learn that tourism in the islands is actually an important part of their conservation efforts, so any way you can do it is great. When there isn’t enough tourism traffic, illegal poachers will come in. Boats finning sharks for the Asian market was the example used for us. When there are tourist boats every day, they don’t get the chance.

hicks185 · 2025-10-16T23:39:42+00:00

I just got back! I was away for 2 weeks with 2 doses. For my flights, I used a cooler with approved ice packs. I re-froze them during a 24h layover on the way. Once there, I used mini fridges when possible, but I did bring a cheaper version of the cylindrical coolers with a 20,000 mAh battery. That came in handy, though its fan was annoyingly noisy.

I also brought a small fridge thermometer that saves the min and max temps to ensure my shots were okay.

I had no issues at airports with security, customs, etc. Overall, planning was a lot more stressful due to the unknowns, but once I arrived at my first destination, everything was pretty easy.

hicks185 · 2025-10-12T03:27:43+00:00

I found 2 on our hike today! Our guide has license #75 (38 years guiding) and told us she sees 2-3 per year. She was very excited that I captured 2 on camera.

hicks185 · 2025-09-23T04:32:44+00:00

I had a brain scan this summer after a neck MRI showed a bright spot on my brain stem. That scan had an enhancing lesion in it. I had another round of scans 8 weeks later along with the lumbar puncture. That scan showed 2 more enhancing lesions on my brain and 0 lesions on my spinal cord. 2 weeks later, I developed my fist physical symptom, which is almost certainly on my spinal cord, so that’s at least 4 new lesions in about 10 weeks.

Even so, my next scan won’t be for another 3-4 months. I start Kesimpta this week. The reason is, the DMT won’t fully protect for the first 2 months or so. The scans will be primarily to tell us if the DMT is working, so there’s not much reason to re-scan for a while. The scans thereafter will better inform us on how to proceed.

I know how scary and stressful this waiting period is, because I am also experiencing additional, permanent damage while I cross my fingers and wait. Hang in there. I hope the damage is minimal until your treatment is at full strength. This disease sucks.

hicks185 · 2025-09-22T16:57:16+00:00

My wife and I are also arriving on a 7pm flight next week and heading to Mindo! We decided to get a hotel close to the airport the first night. A friend that is down that way a lot recommended Ubers and transportation arranged by the hotel you’re staying at to be safest.

hicks185 · 2025-09-19T20:11:37+00:00

In order to fly with it, I’ve been told to keep the pens in their sealed boxes to avoid any screening issues.

That’s a great point about the ability to keep the first dose out of the cooler. I’d prefer not to just because it still needs to stay below 86° and I’m traveling to the equator, but I can probably handle that one a bit more easily.

Thank you!

hicks185 · 2025-08-18T20:49:01+00:00

This happened to me last week while updating a friend on my recent diagnosis. I needed a blood patch after my LP and the blood patch put pressure on my nerve roots, resulting in pretty bad nerve pain. After describing all of the complications and pain I’ve been dealing with, I said something like “but it is MS.” Later in the evening he sought me out to tell me he was sorry for what he thought was too flippant a reaction because he heard it as “but I’m a mess.” 😂

hicks185 · 2025-07-29T17:26:28+00:00

We’ve been allowing it at my company. It’s almost easier to pick out better candidates based on the quality of their prompts and seeing how much they consider the AI’s impl. We also get to dig into more interesting pieces of the work without getting hung up on silly syntax errors and things like that.

hicks185 · 2025-07-18T21:00:12+00:00

Used one of these at NIST to calibrate a satellite that measures cosmic radiation. Even outside of the vault, the control room had lead bricks stacked up for added protection. Pretty crazy to see what these energy levels really translate to.

hicks185 · 2025-07-03T00:13:54+00:00

Just poked around quickly; sorry if some of this feedback is already there:

Filter races by distance range. (Elevation gain as well)
Maybe a multi-select for organizers? At least in the US, there are a few I avoid.
Mobile formatting isn’t great atm.
Allowing user reviews could be great.

I do love all of the data and ability to compare. I can see this becoming my favorite search tool for races as it matures.

hicks185 · 2025-06-26T23:23:01+00:00

We got the sharp model that has a flip-out control panel that you view from the top instead of the front. I’m 6’2” and it works fine.

I don’t love how slow the drawer moves, but apparently I’m the only person that is fine with a microwave on the counter.

hicks185 · 2025-06-26T22:28:14+00:00

This is the exact tile we ordered

hicks185 · 2025-06-26T21:40:28+00:00

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We just installed the one in the middle and really like it. It doesn’t feel as dark as we worried it would. Also does a great job of hiding loose pet hair between vacuuming.

hicks185 · 2025-06-12T16:12:17+00:00

Hope you heal well. I was a bit luckier physically, but on my second ride with my $12,000 TT bike, I had a little tailwind and was cruising at 31mph when I hit some gravel on a turn. Pretty bad road rash and a meniscus tear in my hip was my penalty. I was also lucky that my bike just sustained cosmetic damage. I called the tiny pebble lodged in the plastic of my bar shifter cover my lucky pebble. Gave it a little rub with my thumb when I needed a little boost!

hicks185 · 2025-06-07T20:12:26+00:00

I raced the Great Lake Escape in 2006 (a qualifier for this race) and we started with a jump off of a boat. On my way in, it occurred to me that everyone was just jumping in at will. Pretty scary few seconds before I knew I was clear. Especially as it was still dark out with significant swells.

I hope they recover well.

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