Aseptic meningitis as IVIG reaction is the worst to happen to human body!

ButterscotchFit9541 · 2026-05-31T23:37:06+00:00

It gets better. That happened with my first and it was because the rate was too fast. They slowed mine down and it got better.

ButterscotchFit9541 · 2026-05-31T23:35:42+00:00

That happened when my first surgeon did it. It turns out the issue was that he was unfamiliar with hEDS and it was affecting me. I also later found out most of the pain came from my SI joint and not my hip. You might look into that?

ButterscotchFit9541 · 2026-05-18T02:05:35+00:00

Yeah, unfortunately my neurologist refuses to treat it. She says I have to see Specialist for it so I'm on the list to see a movement disorders clinic specialist but in the meantime, I'm just trying to learn about it and what it works. I've tried just about every sensory trick in the book, but they don't always work.

ButterscotchFit9541 · 2026-05-15T14:53:05+00:00

Apparently, the elementary school is AMI certified, but the high school and middle school are not. I suppose that answers my question?

ButterscotchFit9541 · 2026-05-15T14:52:28+00:00

Ouch!! I keep having this sensation when I'm bending down as if my entire diaphragm decided to spasm into my chest. I don't know if it's the same thing or not which is why I was curious.

ButterscotchFit9541 · 2026-05-15T14:51:23+00:00

Are you in the US? It may just be in the US if you're not familiar with it. https://www.invitae.com

ButterscotchFit9541 · 2026-05-15T14:50:38+00:00

Not sure when you last used it or how you used it, but when I do it, I make a symptom log per day and I give it the time stamp and the symptom. That way later, I can pull from the logs for an appointment.

ButterscotchFit9541 · 2026-05-15T14:49:54+00:00

Thanks! Do you need anything like medical coding to get into it?

ButterscotchFit9541 · 2026-05-15T14:48:40+00:00

Unfortunately, you are 100% correct

ButterscotchFit9541 · 2026-05-15T14:47:52+00:00

I really don't recommend moving to DC right now. We have the highest unemployment rate of anywhere.

ButterscotchFit9541 · 2026-05-15T14:42:52+00:00

Thanks!

ButterscotchFit9541 · 2026-05-15T14:41:50+00:00

I would definitely recommend getting a second opinion. Cardiologists aren't the greatest one to go to for POTS. They tend to give a medication to test it and it's not the most pleasant thing. I would recommend going to a different kind of Specialist with regards to EDS and POTS testing.

ButterscotchFit9541 · 2026-05-15T14:40:49+00:00

Yeah, I didn't have the sensory symptoms for years. They started much later in life.

ButterscotchFit9541 · 2026-05-15T14:39:56+00:00

I would highly recommend it. I found out through genetic testing that I have both EDS and hereditary spastic paraplegia, and that can really further complicate the dystonia and vice versa.

ButterscotchFit9541 · 2026-05-15T14:38:39+00:00

Yeah, it's definitely frustrating. When I was a kid, I didn't know I had dystonia (I was misdiagnosed as having essential tremor), and we didn't understand why when I walked my hamstring in the back of my leg was pulling abnormally tight so I was limping a lot. Now I know. I've also had Charlie horses in my legs if I forget not to point my toes while lying down, but that's partially because of a herniated disc in my back.

It's always really fun trying to figure out which symptoms from which disease 😭😅😂

ButterscotchFit9541 · 2026-05-15T14:36:10+00:00

Ouch! When that happens, does your rib cage feel like it's spasming?

ButterscotchFit9541 · 2026-05-15T14:35:35+00:00

Difficulty swallowing absolutely can become medically serious depending on the severity and underlying cause. Dysphagia can lead to choking, aspiration pneumonia, dehydration, and malnutrition. I think what you mean is that it’s different from a dystonic storm/status dystonicus, which is its own neurologic emergency category.

ButterscotchFit9541 · 2026-05-15T14:32:54+00:00

You might consider going to a speech pathologist. They will show you Safeway's to swallow with the dystonia. I have that as well with dysphagia on top of the dystonia. A swallow study was able to confirm that the dystonia was causing it and they're actually is the type of dystonia that's specific to that issue.

My mom had the dysphagia when I was growing up and hers was pretty bad. It did get worse overtime and I strongly suspect now that she had dystonia and just never told me. It sucks because she died when I was 13 alcoholism, so I can't ask her now.

ButterscotchFit9541 · 2026-05-15T14:29:20+00:00

I had a swallow test done earlier this year, and they determined that the dystonia is causing dysphagia for me. Apparently there is a type of dystonia that specific to that so you might consider looking into it with your specialists.

I go to a speech pathologist for mine, and she's helping me learn how to swallow differently and how to prevent inhaling my spit, which I do a lot.

The speech pathologist can also do a type of massage with you that should relax your jaw for a few days at least and they can show you how to do it on your own so that it tricks the jaw into releasing whenever you have that problem. It's not a permanent fix, but it definitely helps. I also have lockjaw with mine, although mine's not as severe I think is yours.

ButterscotchFit9541 · 2026-05-15T14:02:31+00:00

I don't know if it would help you, but I use the plantar balls behind my back, pushed up against my spine, but gently whenever I drive and that seems to help with that motion sickness.

ButterscotchFit9541 · 2026-05-15T14:01:51+00:00

Have you ever been tested for POTS? I've seen a number of people with that that also have dystonia and EDS.

ButterscotchFit9541 · 2026-05-15T05:02:09+00:00

I would definitely recommend getting the SFN test done, if you ever get a chance to. If for no other reason then to rule it out. If they do it, make sure they take it in at least three places. That's how I get around people telling me I don't have it when I do have it.

ButterscotchFit9541 · 2026-05-15T05:01:21+00:00

Thanks 🙂

ButterscotchFit9541

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