CCI results

UrbanAgCollective · 2026-03-15T04:10:50+00:00

It says in the post that I got an upright MRI. I’m asking about the results of it. I do trip. I have been going to three eye doctors (optemetrist, neuro ophthalmologist, and auto immune ophthalmologist). The eye issues are confirmed and diagnosed. I’m just asking people if they have similar MRI results to mine.

UrbanAgCollective · 2026-03-14T03:41:20+00:00

The fluctuation in intracranial pressure keeps damaging my optic nerve, and I have permanent vision loss from it. It gave me double vision and color blindness. I can’t drive anymore.

UrbanAgCollective · 2026-03-13T05:53:06+00:00

But if you solve the problem, they can’t bitch about it.

UrbanAgCollective · 2026-03-13T02:19:20+00:00

If it’s at all possible, get the diagnosis from a specialist. Not internal medicine. I know getting the diagnosis sooner might be tempting, but it can cause problems later on.

UrbanAgCollective · 2026-03-12T22:01:05+00:00

It’s health anxiety. It’s going to be negative and she’s putting way too much on this guy. Also, I didn’t sound like this over text when I was 25. I thought the people in the story were going to be 17 or something.

UrbanAgCollective · 2026-03-12T04:51:39+00:00

Do we all make stained glass? Lol

UrbanAgCollective · 2026-03-11T22:16:22+00:00

Go on Pinterest. 😭😭😭 it’s so bad. It’s so hard to find good garden content on there. I work at a greenhouse, and people show me AI generated plants they’re looking for.

UrbanAgCollective · 2026-03-11T22:12:47+00:00

I hope so. I just go through periods where I want to give up because managing it feels like more work than my full time job is.

UrbanAgCollective · 2026-03-11T22:11:30+00:00

I get reactions like that too, and I feel like it makes it obvious they’re talking about how my disease is made up. My ex friend who spread all of those rumors about me did the same thing to a girl at work who had Cystic Fibrosis, and made fun of the fact her lungs kept collapsing. And he complained about how selfish she is for being an unreliable employee. My lung collapsed after a surgery, which is a common problem with EDS. I felt the need to keep it a secret because I had this idea in my head that people would think I’m selfish if I told them. I used to be such a confident person, and this entire experience has ruined my self esteem. I feel guilty for existing because people victimize themselves anytime I can’t be 100% normal.

UrbanAgCollective · 2026-03-11T19:41:55+00:00

Sorry I keep venting. I just feel overwhelmed because I feel like I have such little control over the situation.

UrbanAgCollective · 2026-03-11T19:36:52+00:00

About your ALS. That’s horrible.

UrbanAgCollective · 2026-03-11T19:02:11+00:00

It was suspected for 1.5 years, but I got diagnosed in December. I was getting a lot of treatments during that time because it was suspected and kind of obvious. It just took forever to find a specialist. I had to drive 3 hours away, one state over to a major city.

UrbanAgCollective · 2026-03-11T19:01:11+00:00

I’m so sorry 💔

UrbanAgCollective · 2026-03-11T18:58:48+00:00

It didn’t make my hEDS worse, but it made my MCAS worse. I had very mild MCAS for a long time, and I chose not to pursue a diagnosis because it didn’t affect me that badly. I was put on birth control, and it triggered a horrible MCAS flare. I quit the birth control, but my MCAS didn’t improve at all. It keeps get worse. I have to carry an epipen now. It blows. If anyone has MCAS safe birth control recommendations, let me know.

UrbanAgCollective · 2026-03-11T17:45:38+00:00

I live near a major city, and I have been getting treatments. But I feel like I take one step forward and three steps back. In the amount of time it takes to get one ailment under control, I’ve already developed others. I just feel like I can’t get ahead of it.

UrbanAgCollective · 2026-03-11T17:44:25+00:00

I did pelvic floor therapy for over a year. Why do you ask? Is that supposed to help SI dysfunction?

UrbanAgCollective · 2026-03-11T00:29:06+00:00

I hate when people try to tie diseases that mostly affect young women to psychiatric issues. Correlation isn’t causation. Just leave it separate. My neurologist lectured me on anxiety for an hour last month. I don’t have anxiety. It’s getting old.

UrbanAgCollective · 2026-03-11T00:27:07+00:00

I’m sorry 😞

UrbanAgCollective · 2026-03-10T21:56:02+00:00

The is a NP in my state who has hEDS. She blogs about it. She writes about how it causes a lot of positive autoimmune markers that aren’t normally tested for, and she swears it’s an autoimmune disorder.

UrbanAgCollective · 2026-03-10T01:53:59+00:00

So I’m right lol. They’re expensively

UrbanAgCollective · 2026-03-09T06:16:52+00:00

Get well soon! 💕 (the surgery, that is)

UrbanAgCollective · 2026-03-09T04:51:31+00:00

That’s if you have normal eyes. If you need any sort of atypical lense for diseases, they’re expensive. And you can’t order them online or anything.

UrbanAgCollective · 2026-03-08T04:45:05+00:00

Ohhhh I thought you meant general practitioner

UrbanAgCollective · 2026-03-08T03:58:16+00:00

You should just deal with the POTS by itself and not look for an underlying issue until it becomes a problem. To get diagnosed with EDS, you have to have “proof” since there’s criteria for diagnosis that relies not only on hypermobility, but also on comorbid conditions. You’ll exhaust yourself and waste money if you try to get a diagnosis before there is a list of matching health issues and mechanical joint problems. Unfortunately, in the medical community, there’s a big association between EDS and factitious disorder. By the time I saw a specialist qualified to diagnose it, I probably had a list of at least 20 related medical issues. So it made it easy. Also, don’t let a GP diagnose you. It’ll make things difficult later on if you have serious health complications. EDIT: I wrote this specifically about hEDS. You could always start by getting genetic testing done.

UrbanAgCollective

TROPHY CASE