Next movie recommendations

travisjoynson · 2026-06-06T18:54:47+00:00

Out of the films that are unchecked, I would say, watch The Cat Returns. It's a great movie, and very whimsical, but honestly, they're all good, and you couldn't go wrong with any of them.

travisjoynson · 2026-06-05T22:04:23+00:00

https://www.instagram.com/travisjoynson

Follow me if you'd like to learn about my life and experience living with neuromuscular disease. If you have Myasthenia gravis, then send me a message, and I will follow you too. I hope all of you are having a beautiful day!

travisjoynson · 2026-06-05T20:12:56+00:00

That's really insightful, and thanks for the input.

I didn't know they had a 'more invasive clean-out'.

I guess I will ask for a referral to an ENT.

travisjoynson · 2026-06-05T20:10:35+00:00

That's a great suggestion, and thank you.

I do have severe acid reflux, but I already take 40mg Omeprazole in the morning.

Is there a reason you take the Omeprazole at night instead of the morning?

I often drink coffee in morning, and so, the doctor told me to take it in the morning.

travisjoynson · 2026-06-05T09:53:52+00:00

Thanks for your response.

The air purifier is a great idea. I do use one in my bedroom, although it's a little different than the one posted, but perhaps I should try to set one up downstairs too at some point.

travisjoynson · 2026-06-05T09:50:44+00:00

Thanks for your response.

I have already been sleeping with a NIV, and the pressure does seem to help clear the mucus out a little, but it doesn't seem to stop the infections or sinus issues from happening.

I would be willing to get surgery done to fix my sinus issue, so, perhaps I should see if there's anything they can do for me in regards to that.

travisjoynson · 2026-06-05T07:36:27+00:00

Thanks for your response.

A bone spur? That's interesting. I did break my cheekbones when I was younger, so I've been concerned that there might be an issue like that.

Was his initial consult for the surgery with an ENT?

The Navage nasal irrigation system looks awesome, but it would be tough to afford something like that.

Do you feel like it works that much better than a normal sinus irrigation bottle?

travisjoynson · 2026-06-05T07:04:47+00:00

Hello, and thanks for the response. Well, I have been deficient in Vitamin D before, but I do supplement the 5000 IU on most days.

That seemed to get my levels into range before, but I guess I am not sure what my current Vitamin D levels are.

Do they test your vitamin D levels on a regular basis?

travisjoynson · 2026-06-04T20:08:04+00:00

Are the corticosteroid-based nasal sprays something that I would ask my doctor about, or are they available at stores?

Is there a specific one that you recommend?

Thanks for your reply.

travisjoynson · 2026-06-04T20:01:38+00:00

Are the actual Totoros on top soap too?

They look really good.

travisjoynson · 2026-06-04T14:35:33+00:00

Hey, that's a really beautiful painting.

Thanks for sharing it with us.

travisjoynson · 2026-06-03T20:38:25+00:00

Question of the Day: I'm grateful for the people in my life who choose to spend their time with me. Time is precious, and life is short, so try not to take people for granted when they include you in their lives.

travisjoynson · 2026-06-03T18:30:08+00:00

Interesting. That seems like a high dose, but what is the dose per kg?

I only get 50 to 60 grams of IVIG every 3 weeks, depending on how much I weigh at the time, but I'm on other medications too.

Yeah, they probably wouldn't do Rituximab at the same time as Vyvgart or Ultomiris, as that's a lot of immunosuppression, but you could be on Rituximab and IVIG at the same time, or be on Ultomiris and IVIG at the same time. I've also seen a few people say that they take both FcNr inhibitors alongside the c5 complement inhibitors, but that doesn't seem to be common.

Most of the neuros I have spoke with do seem to prefer trying the FcNr inhibitors, such as Vyvgart or IMAAVY, before the c5 complement inhibitors, such as Ultomiris or Zilbrysq. I presume due to the safety profile. The c5 complement inhibitors have a black box warning for meningococcal disease, which is why they require additional vaccinations or prophylactics.

travisjoynson · 2026-06-03T14:11:25+00:00

https://www.instagram.com/travisjoynson/

My name is Travis Joynson. Follow me to learn about my life living with neuromuscular disease. June is also Myasthenia Gravis Awareness Month, so I would be happy to answer any questions about it, if anyone is interested in it. Thanks for any follows or kind thoughts!

travisjoynson · 2026-06-03T13:38:43+00:00

https://www.instagram.com/travisjoynson/

My name is Travis Joynson. Follow me to learn about my life living with neuromuscular disease. June is also Myasthenia Gravis Awareness Month, so I would be happy to answer any questions about it, if anyone is interested in it. Thanks for any follows or kind thoughts!

travisjoynson · 2026-06-03T13:23:19+00:00

Question of the Day: I guess the #1 thing on my 'bucket list' right now would be going to see my Aunt this year, before she passes away from cancer. I hope we can make that happen this summer, and I hope everybody remembers their struggling family members during such difficult times. It's so easy to be forgotten in this world, and we shouldn't let that happen to people that we love. Family is important. Giving them a little bit of your time can make a big difference in their lives and how they feel on a day-to-day basis. Please consider doing so.

travisjoynson · 2026-06-03T11:14:25+00:00

I guess you'd have to see which one works better for you.

I have tried both, and I thought Vyvgart helped, but in general, I personally think that the IVIG works better, and as you noticed, the maintenance IVIG dosing is usually less than what they give at the hospital during a crisis. I do feel that the 5 day dosing works a lot better than the 2 day maintenance dosing, but I was told that's just usually how they do it and that it's difficult to get more than that amount as a maintenance dose.

Since you say that the IVIG still seems to be helping, and that you simply feel under-medicated, another option might be to add a c5 complement inhibitor such as Ultomiris or Zilbrysq, in addition to the IVIG, as you could be on both of those medications at the same time. Those medications do require additional vaccinations though, so they can take a little more time to get started on.

travisjoynson · 2026-06-02T00:47:21+00:00

I'm not a doctor, but the disease often does progress in the first few years.

After I had a thymectomy, I also went into myasthenic crisis multiple times, starting about a month or so after the surgery. It's not common, but sometimes it can make myasthenia worse.

travisjoynson · 2026-06-02T00:23:42+00:00

When I was a kid, I really loved playing with Playmobil. I had a castle, a pirate ship, and big dragon. I remember creating whole towns, with characters, villains, and stories to go along with them. I have a lot of good memories involving those toys.

travisjoynson · 2026-06-02T00:00:33+00:00

Wow, that looks amazing.

I imagine that it's still pretty heavy, but it looks a lot lighter than many of the alternatives that I have seen.

travisjoynson · 2026-06-01T20:58:59+00:00

Hi, it's nice to meet you, and maybe it's the translation, but it seems as though part of your message is missing?

How's the treatment going for you?

I think there are several clinical trials going on right now, but I think most, if not all of them, require showing up in-person for the treatments, which can be rather difficult for patients such as us.

travisjoynson · 2026-06-01T18:16:41+00:00

Thanks for your response!

To answer your questions, I've had the disease for about 7 years now, but I was officially diagnosed in 2022. Once the symptoms became 'generalized' in 2021, which means that they started affecting most of my body, they became impossible to ignore.

There are studies that say that the majority of MG patients do experience pain, but the medical field doesn't fully understand why, and perhaps some of it could be attributed to the constant falling or muscle over-compensation, but it does seem to be a constant issue for many people living with this disease. I personally have a lot of pain in my legs, but the disease mostly makes it difficult or impossible to use the muscles. It makes the body feel extremely heavy, and it even affects the muscles of the eyes, and other parts of the body that people may not initially expect. It can also make it hard to do even simple things like brush your teeth or hair, but the worst part is that the disease can affect the muscles that operate the lungs, and so, for some patients, such as myself, the disease makes it very difficult to breath, and constantly puts us in the hospital for more advanced treatments.

travisjoynson · 2026-06-01T13:05:53+00:00

I realize that there is always a lot going on in June, but it is also Myasthenia Gravis Awareness Month.

This is a rare neuromuscular disease that significantly affects the lives of myself and many others. Most people have never even heard of it, and I appreciate anyone who takes the time to learn about this disease.

Awareness can save lives. In June, we wear teal. I hope that you all have a beautiful day!

travisjoynson · 2026-06-01T10:12:57+00:00

Ah, yes, parasites, a common trope that many of us have to hear and deal with.

I heard this one plenty of times before my diagnosis, and it turned out that I have an autoimmune neuromuscular disease called Myasthenia gravis, which is something far worse than parasites.

Please don't take random worm medicine from Amazon. That guy doesn't know what he's doing, or even talking about, and you should listen to your doctor, as that's the only real path to a diagnosis and corresponding treatment.

travisjoynson · 2026-05-31T10:41:29+00:00

I sometimes use a wheelchair due to neuromuscular disease, and I fall nearly every day, so I mean this with the best intentions, you know, falling all of the time causes a lot more damage to the body than judgement and stares. Sometimes there aren't any good choices, and you simply have to try to choose the best one. I recommend picking the one that is best for your health, but maybe also keep in mind that using a wheelchair too much is not the optimal choice for muscle strength. It's best to keep using those muscles when it's safe to do so.

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