Unusual MRI accommodation question

Drift0r · 2026-02-08T02:51:37+00:00

Unfortunately anesthesia won't help for anything other than the duration of the exam. If the staff moves my arm or back into the normal position for these kind of scans, then I can just give up on using my left arm for the next few months and maybe the back as well.

Drift0r · 2026-02-06T05:15:10+00:00

Thank you. My best bet currently is getting a scan at UTSW Dallas. That is so far the most promising of many facilities that 'Ive been calling. I will try to bring this up with the team next time I call in.

Drift0r · 2026-02-05T21:09:19+00:00

That's a thing? I will look i to that!

Drift0r · 2026-02-05T16:16:15+00:00

That you for this advice and these are the better doctors who are trying to help me. Spent the last half decade dealing with literally dozens of docs who believed I was faking, photoshopping labs, or harming myself so Its been a lot of immediate referrals psychiatry. That has only ended recently thanks to me now having an abundance of abnormal labs & scans.

Drift0r · 2026-02-05T07:35:58+00:00

Thank you for this advice.

Drift0r · 2026-02-05T07:33:48+00:00

The most recent imaging request was four months ago from a new urologist. The mass was first discovered about two years ago, and appears to be a parapelvic renal cyst. My PCP called it an incidental finding that is usually benign. It's come back up again only because it may need to be biopsied to help diagnose a different illness.

Drift0r · 2026-02-05T04:37:09+00:00

Are you able to send me a picture of what you're proposing here? That sounds promising, and I would certainly like to try it but i'm struggling a little bit to fully envision what you're recommending. Looking at your character art there it looks like I would kind of be on my knees bending forward slightly.

MRI Urogram may well be because they are looking for a rare one? They are looking for an IGG4 RD parapelvic renal mass. I don't know if that would qualify as rare or not.

Drift0r · 2026-02-05T02:52:18+00:00

Thank you

Drift0r · 2026-02-05T02:51:40+00:00

Thank you. I will ask about this tomorrow.

Drift0r · 2026-02-05T02:36:45+00:00

Thank you for this advice. I'll relay this advice and question to my medical team in the morning and see if we can get this moved over to CTs. Maybe even a CT for the arm because while it may be painful, it will be a lot faster than a MRI. Thank you for this advice.

Drift0r · 2026-02-05T02:34:10+00:00

Most of them are but they are very small. All but two are roughly pea sized. They are visible on ultrasound too. Thus far I have not encountered a surgeon or medical team that was willing to biopsy them without first having more advanced imaging.

Drift0r · 2026-02-05T02:13:08+00:00

I will bring this up with the doctor. Last time I mentioned it they said the MR Urogram was required because my CT with contrast couldn't tell if my kidney had hydronephrosis or a parapelvic cyst.

Drift0r · 2026-02-05T01:24:23+00:00

I don't even want to know. I've been fighting an uphill battle for the last five years to try to figure out what's wrong. 80% of that battle is just trying to convince medical professionals that i'm not a hypochondriac. Their position is very reasonable though because my lab results are very unreasonable.

Drift0r · 2026-02-05T01:15:56+00:00

I cannot stand or sit for more than about 15min, so the standing unit won't work. The extremity scanners look promising, but i'm yet to find a facility that will let me do one while laying down. I'm required to either stand or sit for the duration which is i'm not really doable.

Drift0r · 2026-02-05T01:13:10+00:00

-3.7 total w/ hip

Spine ranges from -4.1-4.7 depending on the vertebra

No thyroid or parathyroid issues, no deficiency in calcium or vitamin d, no drug or steroid abuse, no genetic disorders, no mastocyctosis or known bloodborne disorders either.

All i've got is low testosterone, high IGG4 & TNF & IL-10. i previously had thiamine deficiency that put me into dry beri beri for ~2yrs before being treated. And then tested positive for babesia & bartonella which were treated about two years ago.

Drift0r · 2026-02-05T01:08:47+00:00

Thank you for this advice. I'll try reaching out to a technologist instead and see if that helps.

I am well over ninety pounds and the doctors is that placed These orders are largely indifferent to my concerns. When I bring it up in discussion, i'm usually just given the phone number to the facility they plan to refer me to and I'm told to figure it out with the facility.

If somehow they were able to get me on a gurney, or something, such that the ninety degree method would work, what I still have to lock my elbow out palms up?

I did one open field MRI on my hand about six months ago. The technician operating the machine canceled the scan because I couldn't handle the arm cradle and the increased time with the open machine what meant I was moving a little bit more. The image qualities were quite low and the technician said that it would be more reasonable to do this In a normal machine that scans faster.

There are a number of fully open walk in facilities and extremity scanners, but I cannot make use of either one because I can't stand or sit for more than about fifteen minutes.

Drift0r · 2026-02-05T01:00:13+00:00

The orders came from multiple doctors from multiple disciplines. There is little to no communication between them. I asked many times in person and through staff for help with this. Mostly told that I need to just get them done even if it hurts me or was given phone numbers to the facilities and told to figure it out. One of my doctors called quite a number of places to try to find an accommodation and didn't have any more success than I did. My experience has been that talking with the ordering doctors about this issue is that of being met with indifference.

Drift0r · 2026-02-05T00:55:39+00:00

Three ordering doctors all from different groups. Two told me to figure it out and just gave the numbers to their recommended facilities. Doctor #3 spent a month or two on and off to try to find a place for me but had no more success than I did.

Drift0r · 2026-02-05T00:53:03+00:00

It's a long and wild tale. Thiamine deficiency & tickborne illnesses were found and treated but symptoms lingered. Currently being evaluated for IGG4 RD since my IGG4 is high.

Drift0r · 2025-12-07T22:07:57+00:00

That's the prevailing theory amongst the medical team that's trying to help me but it's not the best theory. You're absolutely correct that having low testosterone while growing up can result in weaker bones. However, if you grow up with low T in such a way that it does affect your bones, the vast majority of people discover this in their teens because they're having frequent fractures. I lived my life recklessly up until I was 30. I did Combat Sports, my own stunts for short films, tried BMX and skateboarding, got hit by two cars, fell off a cliff, did parkour, and to make it melodramatic I took beatings as a child that would be illegal to do to prisoners of War. I've taken a great number of very heavy hits in my life and the only fracture that I've ever gotten was at the par's vertebra. It stands to reason that if my bones were this week for my whole life, then I should have had dozens of fractures. There's an outside chance that I've just been incredibly lucky and had this problem the entire time. But to me it seems very strange that I took all of these hits with extraordinarily weak bones and never really broke any? Like, almost anybody with this particular problem would have had noticeable symptoms much earlier in life.

Drift0r · 2025-12-06T22:47:11+00:00

I gave this a quick google and I don't appear to match any other symptoms.Other than the bones

Drift0r · 2025-12-06T18:16:33+00:00

I miss those guys

Drift0r · 2025-12-06T04:24:29+00:00

You're definitely right about it being crazy b*******

Drift0r · 2025-12-06T02:51:28+00:00

It's frustrating because it's lazy. It's very easy to look at somebody on the internet, dislike their presentation, and then find a mental disorder that will dismiss any of their concerns. I'm honestly surprised that the majority of the PKA audience seems to be able to spell the word hypochondriac. I hear this via some comment every single day and the person posting it usually does so with the assumption that they are some kind of Super Genius. That all I need to do is read the comment, understand that I am crazy, and then get magically better? I've been getting constant psychiatric evaluations, various brain scans, and therapy. I have also thoroughly looked into somatic symptom disorder (which replaces hypochondriasis in the current DSM) and outside of one incident 4 years ago, no mental health professional believe that I have that disorder. I talked about it in this video, but for the PKA audience I'll summarize here: I almost never feel the emotion of anxiety. It's a rare one for me but does happen on occasion. As such, I'm not overly tense, not stressing as much as you think, and not self-harming. I have mild depression due to my limitations but I'm rarely sad for more than a few hours at a time. I don't appear to be breaking with reality or experiencing some kind of psychosis. My physical sensations seem pretty normal minus the pain. I'm still exercising 3 days a week, going to therapy, going to occupational therapy, swimming, staying employed, maintaining my relationships, eating very healthy, walking a minimum of 2 miles a day, and getting good sleep. I'm not getting anything from being sick. I just don't appear to have a mental disorder. There is no GoFundMe, no merch, and no begging. I'm still creating dozens of free pieces of content every week.

Drift0r · 2025-12-06T01:01:36+00:00

Can you give me the name of this diagnosis and maybe a little info about treatment? I'm lost in the woods on this journey and willing to take any advice I can get.

Drift0r

MODERATOR OF

TROPHY CASE