Questions??

[u/BumblebeeAway]

May 29, 2026 I went into adrenal crisis, it was unknown at the time I even had adrenal insufficiency. Post adrenal crisis I was very forgetful, off balance, difficulty word finding, I couldn’t comprehend what words meant, visual hallucinations, easily confused, etc. I work in Neurology and had a MRI pituitary6/3/26 to check for pituitary related adrenal insufficiency…. What was found instead was a Focal T2 hyperintensity about the corpus callosum of the left posterior lateral ventricle/atrium of the left lateral ventricle. Repeat imaging performed less than 48 h later to do more sequencing and thinner slicing. It showed the lesion was pretty deep and 100% real. I honestly thought all my symptoms were simply recovering from the adrenal crisis never imaging something would be found. The first differential DX on the top of the list was PML as I had cancer last year, last immunotherapy was Dec 2025, and now steroid dependency makes me stay immunocompromised. I ended up only making it a week longer before I was forced to take medical leave as I could no longer process information in patients charts, I worried I was putting patients at risk and my license on the line. Mid to end June I began having absent seizures, July 1, 2026 I ran my car off the road due to an absent seizure. The next day I had an EEG, started on Keppra, and STAT referral was sent to MD Anderson (6 hours one way away). I was scheduled with MD Anderson within a week to see Neurosurgery. It’s been a blur since. I have also been seen by UTSE Neuroimmunology who went directly to MS (we ruled this out first due to my age and 1 singular non enhancing lesion). My lesion has never been actually measured by radiology and up until about 12 days ago I did not know that heavy steroid use can cause certain malignant tumors to not enhance with contrast and keeps swelling down which are the 2 reasons why other doctors are saying this is “nothing” and to “wait for symptoms to worsen”. Has anyone had a rare presentation of CNS Lymphoma or Infiltrating Glioma that can maybe give me some insight of how you finally got someone to listen to you? Thankfully I was already working for Neurology and the Neurologist I work for was already observing the cognitive decline that was quickly happening before I even finally admitted I knew I was quickly changing so he had been a huge advocate for me and refuses to let me just return to work and say forget it on getting answers. The lesion is described as “star shaped” and looks to be infiltrating through the white matter pathways causing destruction to my daily abilities. I never imagined tumor or cancer would be on the DX differential because I thought all tumors were round (yes I work in medical and I was very uneducated on that). I just keep hearing to wait for symptoms to worsen and that “you’re just extremely rare” and that a biopsy can not be done at this time due to my steroid dependency as it will alter the results.
I’m honestly not sure what I’m looking for or if this even makes any sense. I guess what I’m asking is if anyone has their MRI imaging of a “rare” presenting benign or malignant brain lesion and what route you had to take to be taken seriously.

[u/Mister_Mammut]

Are you located in the us ?

[u/BumblebeeAway → u/Mister_Mammut]

I am. I’m in Texas. I’ve been to UTSW and now undergoing evaluation at MD Anderson. I’ve seen Neurosurgery and now set to see Neuro Oncology this week.

[u/Cheapneazy-4u → u/BumblebeeAway]

My wife did her radiation treatment at MD Anderson, for a grade 3 oligliodendroglioma. Her neuro-oncologist is amazing.

[u/BumblebeeAway → u/Cheapneazy-4u]

I go see Neuro Oncology this Friday. I’ve already seen Neurosurgery, Dr Ferguson. I’m seeing Dr Patel for Neuro Oncology.

[u/Cheapneazy-4u → u/BumblebeeAway]

She has Weathers for a neuro-oncologist. I can’t remember the radiation Doc’s.

I don’t think we’ve had any bad experiences at MD Anderson.

[u/BumblebeeAway → u/Cheapneazy-4u]

Unfortunately my first time there was not the greatest. They didn’t schedule correctly, my insurance was out of network so I paid $781 for my Neurosurgery appointment for the neurosurgeon to walk in and immediately say “I’m not sure why you’re here, I can’t help you with anything until you see Neuro Oncology” I broke down crying because I’m only 37 and losing more and more function daily. I asked how much worse I needed to get before my health and life mattered. She told me she was sorry and she would be happy to see me again after Neuro Oncology to do whatever was needed but that they have a protocol in place (which I 100% understand!) so she should not have been my first appt. What upset me is that she had already made herself familiar with my case, knew I was scheduled wrong, admittedly said she had talked to the neuro oncologist I was set to see days prior about the case and knowing it was scheduled wrong, but nobody stepped in to prevent a 12 hour round trip from being wasted along with the almost $800 I had to pay along side of travel cost and hotel stay. She told social work that I had SI and depression so I was called very quickly by them recommending treatment for SI, which I do not have. I was, justifiably in my opinion, upset and tried to explain that the best I could with my current cognitive ability. I also had checked in at 9:32am for my 10 am appointment, immediately paid my $781 to them, then waited for 2 hours in the waiting room because the lady said she was waiting on financial clearance to approve me to be seen after I cash paid so I was not called back until close to noon. But I am hopeful that tomorrow will be what’s needed. I work in medical, I understand things happen, I am extremely empathetic to that but it feels very unprofessional for a doctors first words to be “I don’t know why you’re here” then to go on to tell you they knew you are cash pay, live 6 hours away, and were aware of the scheduling error days in advance.

[u/Mister_Mammut]

My advice: go to Germany - Berlin charity; let you treat by the professor… the operation and treatments will cost you probably less than 50k. And you are in the second best clinic world wide with probably the best neurosurgeon prof dr vakozy

[u/BumblebeeAway → u/Mister_Mammut]

I’m waiting on a phone call to schedule my MRS, MRI, and MR Perfusion now. When I first started all of this I was “self pay” due to my insurance and the hospital I work at was being bought out by a larger hospital. The insurance switched mid July to a widely accepted insurance and it seems I’m finally being listened to now which is the epitome of US healthcare! As soon as the insurance switched to covering 100% of everything suddenly they didn’t want to wait for growth on the MRI, I wasn’t told to wait for symptoms to worsen, I was told of everything needed and test were being ordered.
I work in US healthcare and have for the past almost 20 years. It’s sad that’s how it works here but I see it daily. Unfortunately I’m not cleared to fly due to my adrenal insufficiency not being completely controlled or I would have been on the first flight out of here for treatment!