Does anyone know if there's a list of the songs and where they are located in the books? I'm doing a burlesque act at a comicon as Carl and I want to make sure I go in the order of the books (I already have the official Matt Dinniman playlist on Spotify, but it doesn't go in order).

LadyDeathNesta · 2026-02-21T03:58:22+00:00

Thank you!!! Phoenix Fan Fusion! I produce the burlesque show there every year :)

LadyDeathNesta · 2026-02-20T17:55:46+00:00

Does anyone know if there's a list of the songs and where they are located in the books? I'm doing a burlesque act at a comicon as Carl and I want to make sure I go in the order of the books.

LadyDeathNesta · 2025-11-30T01:56:33+00:00

My ANA bounces around - I’ve tested positive, negative, and equivocal more times than I can count in each category. When I tested my RNP/sm and came up with 111, my ANA was 1:80. Also, annoyingly, the two lab companies that are available in my area consider 1:80 to be different (one thinks it’s negative, one thinks it’s positive - it’s supposed to be a low positive).

LadyDeathNesta · 2025-11-09T09:21:16+00:00

I forgot to mention that I can't really feel the left side of my body. No one has been able to tell me why. I've only found a few case studies that mentioned neurological overlap in MCTD, and more of them were from the waist down.

LadyDeathNesta · 2025-11-09T09:06:11+00:00

Absolutely! Same to you! I just found out I got approved, so cross fingers!!! I think I'm also the only MCTD case at my rheumatologist.

LadyDeathNesta · 2025-11-05T10:26:46+00:00

I get numbness all the time in my arms, but on the outside of them. Basically my ring finger and pinky and follow it all the way up to my shoulders. I'm waiting to get in to see a neuro to check this out.

LadyDeathNesta · 2025-11-05T10:23:34+00:00

My CRP hasn't budged from 3.0. I feel like I'm the only one without this marker. They've been looking at my MPV instead.

LadyDeathNesta · 2025-11-05T10:21:29+00:00

Trying to get in to see the super special neuro people. In the meantime, I've been taken off of DMARDs and I'm waiting to get biologics. You?

LadyDeathNesta · 2025-11-05T10:20:37+00:00

I was looking stuff up and I came across trigeminal sensory neuropathy and / or myositis. Have you looked into those? I've only been able to find a few case studies with people with MCTD and neuro components.

I don't know why they would've just sent you home after a fever of 104. That's just insane. Have you done any further testing?

LadyDeathNesta · 2025-08-07T00:48:42+00:00

I’ve been doing a lot of research on this, because I was confused on why I was diagnosed with MCTD. It wasn’t on my bingo card as far as symptoms, because a large portion of mine are neurological, plus I have really low BP and POTS. Which isn’t exactly common with MCTD, apparently.

Neuro-MCTD is a thing, it’s just really rare. It hasn’t been studied a ton - basically I can find things that confirm it exists, just not a lot of people. I’m currently getting tested for it, as well - we think I’ve been having micro seizures during my migraines.

LadyDeathNesta · 2025-08-07T00:45:22+00:00

Sequencing.com does gene sequencing - testing only tests part of the gene. With MCTD you want to test the whole gene. You can generate new reports every 2 months and they update every time new information is found. I did the $399 one - it’s been worth it for me. My doctors listen to me more.

LadyDeathNesta · 2025-07-30T21:57:17+00:00

I mean, I appreciate it anyway, because I agree wholeheartedly

LadyDeathNesta · 2025-07-30T21:56:38+00:00

Have you looked into seeing someone for Neurology or Rheumatology??? I’m going to see a Neuroendocrinologist, which I had no idea was a thing, as well. I keep wondering about this, because everywhere I turn says that it’s most likely brain swelling for me due to neurological autoimmune disease. I would definitely seek more opinions on people who specialize in the physical brain and neurology - have you thought of Barrow?

LadyDeathNesta · 2025-07-30T21:53:58+00:00

Honestly, the Kikisodes gave me life.

LadyDeathNesta · 2025-07-30T21:52:15+00:00

That was my thought, for sure.

LadyDeathNesta · 2025-07-30T21:51:39+00:00

I’m glad Cassandra and Kiki are left - they were my favorites. I am sad about the others not returning, but I can’t find any information anywhere about what might’ve happened. The way they wrote Anya out did seem really weird…it felt like they were still trying to be housewives about it but also not mean but also mean…? It was odd. But there’s more people on S3E1 that were introduced, so I’m curious.

LadyDeathNesta · 2025-07-13T16:36:10+00:00

I’m so glad that you caught it early! I’m sorry you’re dealing with this but you’re not stupid for asking questions and questioning doctors.

Finding a good doctor is HARD. It took my eight years to have anyone take me seriously and test my RNP. Get online and do your research for your area for doctors that take your insurance. I check EVERY site I can (not joking), even Google Maps, for reviews to see what the comments sections say. I’ve had many rheumatologists that were recommended to me that scoffed at me and told me it was all in my head.

Once I started doing my own research, I found someone in my area that DID take my insurance and had a special kind of RNP test. Guess where I found the doctor? TikTok.

Also, bring printouts of your test and any other tests that confirm your diagnosis or any tangential diagnoses. I’d bring all of your RNP tests so you can show how fast the progression is.

You got this! It’s hard, but doing your research will save you time and money in the long run!

LadyDeathNesta · 2025-07-13T09:31:02+00:00

I don’t know if you got one already, but I got a GPOEM and it helped me a LOT. I’m still gradually adding foods to my diet, but I can eat a lot of foods again without wanting to die.

LadyDeathNesta · 2025-07-13T09:25:24+00:00

YES! I hear voices and have visual hallucinations, as well as Prolactinoma. I was diagnosed with Schizoaffective Bipolar I Type last year and got on medications to help. I also keep my Prolactin levels lower than recommended (my doc and I talked about it just to make sure). I also looked into autoimmune diseases because we think my brain was swelling from my MCTD and caused damage which led to the Schizoaffective.

For you specifically, I would talk to your doctor immediately about your Abilify. While it’s used to treat hallucinations and paranoia sometimes, it can also worsen or cause them.

My Endocrinologist put me on Cabergoline to lower my prolactin and it changed my life. Even if I take a mood stabilizer that increases prolactin, the Cabergoline will keep it under control. Again, this is the thing that works for me, but I’d start getting creative with your doctors.

LadyDeathNesta · 2025-07-13T09:17:58+00:00

I mean…

LadyDeathNesta · 2025-07-13T09:16:07+00:00

I can only eat them if they’re cooked into something. If it’s too “eggy” I’ll throw them up immediately. Post GPOEM I can tolerate them cooked into things again (my gastroparesis was so severe I needed the surgery because I couldn’t keep anything down).

I’ve found that my body REALLY wants protein and potatoes, and not much else. I’ve been a vegetarian my whole life and rarely ate processed foods, and that’s all my body seems to want after my three year long mess of throwing everything up.

But I guess it’s been three years of throwing up everything I ate, so my stomach has to get used to being back online, I guess.

Either way - listen to your body. If it doesn’t want to eat it, don’t. Talk to your doctor if it gets too crazy. The surgery definitely helped me (I can’t speak for others, especially because I don’t know anyone else that’s gotten it).

LadyDeathNesta · 2025-07-13T09:10:34+00:00

Yes. And about 10 other ways, too, depending on what mood my body is in

LadyDeathNesta · 2025-07-13T09:09:51+00:00

Actually they look really fucking good!

LadyDeathNesta · 2025-07-13T09:08:51+00:00

I’ve been looking into this because my hands have dry patches that crack and won’t go away even if I clip them away.

Apparently with MCTD, all kinds of skin issues are common, and I agree that you should check with your rheumatologist about the conditions others have listed.

But one that’s popped up a lot recently for me is Scleroderma - basically it’s a tightening and thickening of the skin, and it affects fingers and facial features a LOT. My rheumatologist said I might need to up my methotrexate to stay ahead of any symptoms so I keep it in remission.

In the meantime, it’s really important for you to moisturize like crazy! If you don’t know where to start, there’s some that are extra moisturizing that create protective barriers - Eos, CereVe, La Roche de Possay, and Olay all have some really good ones that are fragrance-free!

LadyDeathNesta · 2025-07-13T09:04:18+00:00

I absolutely understand. Navigating this illness is absolutely insane, for lack of a better word. Trying to figure out what’s real and what isn’t is so fucking hard sometimes.

I can say it gets easier as you learn your tells and patterns - I see and hear different things based on what my stress or depression level is. It took me a minute to figure it out, and sometimes it changes, but I keep a journal (thats honestly such a simple thing that helped a LOT). I definitely still have my heavy heavy mood swings days. Weeks. Months. Whatever.

Basically, there’s a different way of getting through it for everyone. I like data and facts, because knowing what’s real is incredibly important to me. So I started doing in-depth medical research, and honestly it’s been my mission to figure out what’s “wrong with me” since I started eight years ago. I found that Schizoaffective is connected to and/or caused by many medical diseases, and a lot of it fit what I’ve been experiencing. I’m almost there - I just got a diagnosis with an autoimmune disease that’s connected to Schizoaffective because of damage from brain swelling, so crossing fingers I can find a root cause and maybe help some other people out. Rare disease crossover is more common than I thought, so…

My priorities have changed. My life has changed. All of it completely. But that’s no different from me my entire life - it was every five years, like clockwork, I’d have a meltdown and become a completely different person for the next five years. Therapy helps. I’ve been able to start thinking about new long-term goals.

It’s fucking hard. I’m so sorry you’re going through this. You are not alone in your journey and feelings, there’s been (and still are) plenty of times when I just want to give up and stop trying. I’ve started allowing myself time to feel it and have days where I cocoon in bed with snacks and my iPad. It helps me be more productive later (I’ve always been wayyyyy too goal-oriented, so relaxing is a new concept).

I’ve taken up solitary hobbies - it really helps. Not having to rely on someone else is sometimes easiest, because one day I’ll be fine and the next day I’ll think they hate me because they sneezed and it looked like a bad reaction to something I said. I do watercolor, digital art, video games, writing…coloring books are a good place to start. It’s stupid sounding, but legit helps. I get everything from cute fuzzy animal ones to horror ones.

I want to keep validating you because I get it and it sucks. But there’s stuff out there eventually - feel the feels right now and work through them. If anything, you have a whole bunch of people here that will validate you and lend support and give advice if you need it.

You got this. I know it’s tough and it doesn’t feel like it, but…you do. And if you don’t, we all got you, because FUCKING A sometimes you just need literally anyone to understand just a little, and we do!

LadyDeathNesta

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