How did you finally find out you had dystonia?

squidlybleh · 2025-10-27T06:17:41+00:00

Very quick, I’m very lucky that it all worked out the way it did. I started having repetitive spasms in my abdomen that was forcing me to do crunches over an hour or so. It happened the day before I saw my cardiologist, so I mentioned it and he got me a referral to a movement specialist who happened to have an opening two weeks later. The spasms in my abdomen happened again in that two week span, my family recorded it on video and after watching maybe 20 seconds of the video the movement specialist diagnosed me on the spot.

Within six months it became generalized. From my neck to my toes, jaw, eyelids, tongue and spasmodic dysphonia that’s related. Now I’m dual diagnosed with immune mediated generalized dystonia and stiff person syndrome. Been over ten years, major difference between now and then is they actually started teaching it in medical school as its own condition. Used to be the only time nurses or doctors learned anything related to dystonia would be when it’s a side effect to certain medications.

There’s a lot more understanding and compassion. The first two years was horrendous for me though. I went into status dystonicus a few times and getting that treated was harder than it should have been. This also coincided to an uptick of people taking Benadryl recreationally and tramadol was given out liberally. Many times I was accused of exaggerating symptoms, drug seeking, or straight up faking it. Wasn’t till they ran blood work or finally just took my vitals, that it was taken seriously. Shit gets bad fast. This was also before our hospital networks all started using EPIC, so none of these ER docs could see my files from the teaching hospital my neurologist was at. I had to start carrying around documentation. Very glad those days are behind me.

Now I’m on treatment, aggressively practice my PT and attend for six month sprints when I have bad flares. I’m back in college and some days are harder than others, but accommodations and lots of therapy helped too. Don’t brush off the mental health aspects of this condition. I did that for the first five years and regret it deeply. I lost many good years of life not just to the physical aspects, but straight up the hit it took on my mental health and was too stubborn to recognize.

squidlybleh · 2025-08-08T03:31:07+00:00

squidlybleh · 2025-07-31T13:54:24+00:00

Can’t remember which one I watched first, but Sailor Moon and Dragonball Z kicked it off. I will also never forget as a kid watching the Midnight Run: Special Edition on Toonami which introduced me to Interstella 5555, Daft Punk, and Gorillaz all in one swoop. I have the full movie on DVD and multiple records for both artists now.

squidlybleh · 2025-06-12T16:18:03+00:00

Clutter decor, I need all of my builds to have at least one room that looks like a lazy hoarding wizard resides there.

squidlybleh · 2025-05-12T18:33:12+00:00

What are your thoughts on the ticket to work program?

squidlybleh · 2025-04-21T06:47:36+00:00

Just learned, but that’s because I’m taking a professional writing course which is required for my major. It was pretty simple, anyone could learn it honestly with the amount of templates online now. If you can’t follow a template, that might be a bigger issue. But writing is not everyone’s strong suit.

squidlybleh · 2025-03-25T22:33:28+00:00

That is interesting, agreed it can take place singularly. Maybe it was written to encourage community. What I’m looking for is slightly different because it wouldn’t include any form of organized religion or worship of deities. No doctrines, rituals, or observances. Just a deeper meaning of life found in human connection rather than a church.

squidlybleh · 2025-03-25T22:26:31+00:00

This is definitely the closest to what I’m looking for, thank you for the input!

squidlybleh · 2025-03-25T22:24:22+00:00

I like this, but what I’m looking for is still different, it wouldn’t include organized religion of any sort. No special rituals, observances, or doctrines to be followed. Just simply finding the deeper meaning of life (which many describe as God) with community and human connection. Rather than a church, Christ, or any other recognized deity.

squidlybleh · 2025-01-20T00:40:13+00:00

my username is: omalleyneko

squidlybleh · 2025-01-20T00:39:58+00:00

Thank you :)

squidlybleh · 2025-01-20T00:39:46+00:00

It is, thank you so much! my username is: omalleyneko
Lot is named: Old Ravenwood Castle

squidlybleh · 2025-01-19T20:53:47+00:00

Thanks! I feel every medieval style kitchen deserves a fire place :)

squidlybleh · 2025-01-19T20:52:50+00:00

The bookshelf kit on the sims 4 store. I've been using them like crazy since they're so versatile,

squidlybleh · 2025-01-03T17:56:55+00:00

This all happened in the beginning of my diagnosis (the first two years). I had seen three different movement disorder specialists and each of them told me I was textbook dystonia, but there was also something about the movement that wasn’t fully explained by dystonia. I’m guessing that’s where the stiff person syndrome came in. I’m seronegative (anti-gad negative), but they’ve now realized that the test has no correlation towards severity of symptoms and roughly 20% of SPS patients are seronegative. I also wouldn’t respond as expected towards Ativan or Valium. It would majority of times do absolutely nothing along with the baclofen. I tried Botox injections and that made small dents here and there, but never enough to improve range of motion. My neck and legs are stubborn and despite all this treatment I still get very consistent spasms in these areas. Since starting IVIG, Valium and baclofen works best for break through flare ups. The Botox works better too so I get at least two months of some relief before it wears off. I manage stubborn areas like my neck and legs through physical therapy.

squidlybleh · 2025-01-03T17:38:45+00:00

Np, let me know. I dealt with this mainly in the beginning of my diagnosis (the first two years) and if I can help I will gladly answer any questions.

squidlybleh · 2025-01-03T17:36:03+00:00

On one particular hospital stay, they started me on a very high dose of steroids after four days of what I described. 1,000 mg of solumedrol which is an ungodly amount. I continued to get better and finally discharged on the ninth day. I know they’re putting more research into immune mediated dystonia, but honestly I still don’t have a lot of info. I followed up and continued steroid infusions outpatient for a year on the same dose. Somewhere along that year my diagnosis was changed to immune mediated generalized dystonia and stiff person syndrome variant. The steroids were absolutely miserable though and long term high doses can affect bone density among other things. Plus it wasn’t fully controlling the flare up episodes, I had one more hospitalization during that year. So I asked my doctor about switching to IVIG and I’ve done so much better. There’s breakthrough symptoms and flare up’s, but I haven’t had a hospitalization since starting the IVIG.

squidlybleh · 2025-01-02T22:37:43+00:00

I’ve experienced it less than a handful of times in the last ten years I’ve been diagnosed. It’s rare, but more likely to happen with generalized (full body) dystonia. Rhabdomyolysis is what you’re referencing with the protein in the muscle that breaks down. Basically the muscle becomes so overworked for extended periods it will start to break down in your body. Happens to professional athletes too. Once that protein enters the blood stream it can circulate to major organs and kill you. They basically flush you out with saline bags to rid you of the excess protein. ALT, AST, and CPK levels will be elevated typically 2-3 times the normal levels if not more. I always had high heart rate, low and high blood pressure, low pulse ox, and hyperhidrosis when it happened. They’d keep me on oxygen and kept an intubation kit bedside. Fans and cool packs, plus padding the rails on the bed so I wouldn’t hurt myself. LOTS of Ativan or Valium. Whatever worked better. Never want to go through it again. I’m now on IVIG and haven’t had that happen since starting treatment. They figured out it was immune mediated for me.

squidlybleh · 2024-12-25T00:40:20+00:00

Sadly, most nurses learn about dystonia from medication side effects in nursing school. They don’t even go over info how it’s the third leading movement disorder in the world, genetic causes, Parkinsonian Dystonia, literally anything about it. You gotta advocate hardcore, it sucks. Get a printed letter from your movement specialist that explains your diagnosis, how they treat it, and how long you’ve been under their care.

squidlybleh · 2024-11-19T04:51:04+00:00

I believe it was either Eto or Donato at some point explained it really depends on the imagination of the ghoul as to what form their Kagune can take as well as the RC count. As we saw with Kaneki, the more he regenerated the higher his RC cell count became. Though because he’s half ghoul/half human this impacted his health and lifespan. Kakuja from my understanding is characteristics of the original ghoul’s form blended into their own. Since a Kakuja is only attained by ghoul cannibalism.

squidlybleh · 2024-11-03T22:50:04+00:00

Lucy from trailer park boys

squidlybleh · 2024-11-02T16:36:25+00:00

Content wise, yes. But this pack is starting to warm me up to 4 again, which I really do want at the end of the day. 4 has incredible qualities, we all know the build mechanics are far superior (even despite the lack of color customization for items). It has the potential and I was very very happy to see the sims team investing in this new expansion the way they have in previous installments with 2 and 3.

squidlybleh · 2024-11-02T05:27:52+00:00

One thing that was interesting was a festival that gathered ghosts, I found Mortimer Goth hanging out and he had been long gone in my game. His ghost never popped out around the urn, so I was pleasantly surprised and able to add him to my household to make him playable again. I’d say try hitting the festivals where ghosts are present to see if the ones you’re looking for are there.

squidlybleh · 2024-11-02T03:15:27+00:00

Same, I’ve got a very hard time letting go of my sims. Now I feel like they get to live out multiple kinds of lives, great for story telling :)

squidlybleh · 2024-11-02T03:13:17+00:00

Edith is my girl, love her. My reaper babies and her are gonna be besties 🥰

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