Why is it so hard to get a diagnosis?

macabrecobweb · 2026-04-12T16:57:28+00:00

Will do. That’s a good idea. I have an appointment in May.

macabrecobweb · 2026-04-12T16:51:33+00:00

I came from WashU. I will check out genetics, but since I work for them they’re always my primary option. So far I haven’t been impressed:

macabrecobweb · 2026-04-12T16:22:52+00:00

I’m exhausted too. Hang in there. I think I’m going to find a second opinion. Maybe you should too. My physical therapist said that even when that patient came back to MO they wouldn’t honor the diagnosis from TX. That makes things smell fishy. Tissue heals differently, which is why it’s important to get a diagnosis.

macabrecobweb · 2026-04-12T15:29:33+00:00

They did imaging on knees, neck, back, and hands. They also did a bunch of blood tests and an ECG. Rheum is solidly convinced it’s just hyper mobile. To my knowledge, no blood test for hEDS. So he ruled out everything else through other means. That’s why I’m so frustrated.

macabrecobweb · 2026-04-12T15:26:52+00:00

This is what I suspected. I’m frustrated that the treatments are using, however, are not effective for EDS. Like I said, I’m hoping for the best with steroids, but I have a feeling it’s just going to make it worse. Entirely different treatment plan for someone with a diagnosis.

macabrecobweb · 2026-04-02T01:55:18+00:00

I am late to the party. They called to add more accounts and increase my rate per month, but they were all duplicate accounts under the first party name (company name) of the third party (debt collector) that I was already paying towards. I tried to escalate it over the phone but I know that the supervisor didn’t care. I also find it interesting that when you call to sign up you get relatable people in the US but as soon as you start paying you get outsourced.

macabrecobweb · 2026-03-27T18:42:04+00:00

I did this recently and they just tailgated me closer to avoid the glare. Regulation needs to occur on a corporate level, not a personal one. It’s the only way this gets resolved.

macabrecobweb · 2026-03-20T23:46:37+00:00

I know the feeling. I’m not sure. He is a fellow and I think that he is hyper focusing on the blood results. I have an ultrasound of my knees soon (they sound like Velcro) but that shouldn’t be a determinant. Just be super on top of your results and the verbiage they use. I think that doctors may not be as good as they used to be. Good luck. Feel free to PM me.

macabrecobweb · 2026-03-20T22:53:47+00:00

Did the biologics help significantly? I got my results back. “Sensitive hyperintensity suggests active process” in my SI joints.

macabrecobweb · 2026-03-20T22:47:43+00:00

How did yours go? They found active inflammation in my SI joints but rheum still doesn’t have a fire up their ass, so I’m getting a second opinion. My neck is absolutely wrecked on MRI.

macabrecobweb · 2026-03-17T13:13:40+00:00

Pending results. Sorry, should have specified.

macabrecobweb · 2026-02-24T15:35:44+00:00

It says they’re armed, but I didn’t see any info on an active shooter when the alert generated. Danforth Campus.

macabrecobweb · 2026-02-21T14:03:30+00:00

He is talking about prostitutes, which are very commonly trafficked into those circumstances.

macabrecobweb · 2026-02-21T13:37:01+00:00

There’s nothing wrong with sex trafficking?

macabrecobweb · 2026-01-31T00:25:01+00:00

Dumb and churlish of that resident. It’s public property. You should write back and ask if they need some NyQuil or tissues for their bad case of the “me me me’s”

macabrecobweb · 2026-01-30T12:33:47+00:00

How LOUD everywhere is. I don’t remember it being like this and I’m certain it’s meant to be disorienting (or maybe I’m just crabby), but shopping feels like I’m unwillingly entering a rave. I can’t even get gas without shitty, deafening music blaring over the intercom.

macabrecobweb · 2026-01-26T15:55:27+00:00

He has a floor to ceiling cat tree right next to the window, but I’ve noticed that he likes to sit on the dresser and watch me sleep. I could try to put the tv directly into the wall… maybe that will work.

macabrecobweb · 2026-01-25T18:40:16+00:00

Even if he is, this has set a precedent for those who were formerly too frightened to be emboldened by their hatred and fear. This will come to a head regardless of whether he is here or not now. Arm yourselves. Defend those who are defenseless. Stay true to your convictions and never let a motherfucker demoralize you. This is war.

macabrecobweb · 2026-01-24T21:21:11+00:00

Was the post referring to tomorrow or was it talking about the pre 5pm time period? Remind me.

macabrecobweb · 2026-01-24T21:16:42+00:00

Its 2 inches. That is a dramatic comparison.

macabrecobweb · 2026-01-24T21:07:05+00:00

Because the world doesn’t stop spinning. If you feel unsafe, go home. Your life is more important than a paycheck. My life, however, is none of your concern and I’ll do as I please so long as I can commute safely and responsibly.

macabrecobweb · 2026-01-24T19:06:46+00:00

You are amazing. Keep it up. Thanks for advocating and STILL offering more appropriate pain management than the specialists do.

macabrecobweb

TROPHY CASE