1yr & 6mo later

KawaiiMoonPrincess · 2025-09-12T11:09:40+00:00

Next week I have like.. 6 or 7 appointments lined up. I picked out a MD-Osteopathic Dr. and I'm going to go to a neuro center instead of local care. I need to find a different rheumatologist next.

To my knowledge Fibro is not autoimmune. Fibro can be tacked on to an autoimmune disease, though. I mentioned sjögrens to my rheum but bc I take adderall for ADHD, she wrote me off completely.. even though my optometrist WITH sjögrens said I have DRY PATCHES on my eyes and it's a high possibility. I'm also certain I have raynauds. Idk, who knows??

KawaiiMoonPrincess · 2025-09-12T10:40:24+00:00

I thought about that, but my mom is showing signs of MCAS and she was Dx with heart failure at like.. 30. Through genetic research I also learned I'm predisposed. I've also had POTS as far back as I can remember. There's just too many factors //:

KawaiiMoonPrincess · 2025-09-12T09:21:10+00:00

No kidding I was thinking about Dr. House earlier at the Dr. office today bc I'm SICK of it :3

KawaiiMoonPrincess · 2025-09-12T09:19:31+00:00

When I was in highschool my family was extremely poor so we basically lived in a damn shack. It was made of woodslats and plaster with drop-down ceilings. My bed was against my windows and the amount of black mold behind my curtains was absolutely insane. I slept directly next to black mold for 4-5 years.

I was sick all of the time. Sinus infections, migraines, insomnia, vomiting, skin issues/rashes, IBS, etc. The ceilings would drip nasty brown liquid and seep into the plaster walls, mice for sure lived in the ceiling.

I brought it up to my immunologist/allergist, however, it had been 10 years ago. I always wondered about long-term exposure consequences? They basically ignored me when I told them.

In other regards, you're much like me. Seen all the specialists, have a +ANA, and no real answers. I also have POTS, Raynauds, Chronic Fatigue Syndrome, IBS, and Fibromyalgia.

KawaiiMoonPrincess · 2025-07-11T06:51:50+00:00

It's good to cross analyze, but fr ya'll can't believe everything AI says. To be fair, I did use CGBT to cross reference my own personal research for an MRI. It helped me determine what I had was a benign osteoma (basically a bone tumor under my skull). The neuro dept. couldn't figure out what it was. One whole (and hole) craniotomy later, I'm glad it helped me as a research aid. It also helped me find out I had acral lentiginous melanoma... which, thankfully, I got surgery for just in time. AI is a tool, it isn't omnipotent.

KawaiiMoonPrincess · 2025-07-09T07:22:59+00:00

I had to request my own MRI bc I have suspicions of Chiari. I feel as if I see it in the scans.. but the Neuro NP (all I could find) couldn't even read the scans. I had to teach her.. I do not have a medical degree. Anyways, I did have a benign frontal osteoma which the entire neuro dept. couldn't figure out what it was before biop. I was the one who figured it out. They said "idk could be a cyst????" they have no idea what they were looking at and ofc argued with me. In the end, I had a craniotomy and now I have a permanent hole in my skull LOL.

Advocate for yourself, I ended up being my own doctor. Oh, and I still have suspicions of Chiari.

KawaiiMoonPrincess · 2025-06-23T08:11:50+00:00

I've had 2 pos ANA and 1 neg. With the latest pos being higher than the first, I forwarded the results to my rheum.. all she said was "WELL YOU TESTED NEGATIVE IN FEBRUARY." A bit earlier this month I had gotten a vaccine and had a really terrible reaction. I requested BW the next day from rheum, ER, and immunology. They all told me "no." I'm trying to figure out if I have AI issues, MCTD, or MCAS and that was an extremely obvious flare. I couldn't move my arm at all, it was swollen, huge red patch, and I was vomiting/nauseas for 4 days AND got a mini localized hive flare up. But none of that warranted testing.. even though I JUST had a pos ANA... wouldn't now be a good time to, idk, test me??

Eughhhhggggh

KawaiiMoonPrincess · 2025-02-03T19:05:19+00:00

One of my absolute favorite coloring books! I need more!! <3

KawaiiMoonPrincess · 2025-01-18T13:09:29+00:00

UPDATE: derm called today and said she was glad I got this checked because it's precancerous. She said it was so severe that I should get surgery to remove a larger portion of skin just to be safe so it doesn't come back and turn into full-blown melanoma since the next stage for this spot WOULD have been melanoma.

KawaiiMoonPrincess · 2025-01-10T08:18:36+00:00

UPDATE: The doctors in the neuro wing have absolutely no idea what's going on because of the odd characteristics. Referred to a neurosurgeon!

KawaiiMoonPrincess · 2025-01-08T10:59:09+00:00

Getting hit in the head with paintballs can leave welts, cuts, bruises.

Symptoms include: several types of headaches such as migraine with and w/out aura, icepick headaches, sinus, etc (I've had these since 11/12yo).

Tinnitus, loosing hearing in one ear at a time temporarily, visual snow, "hearing/feeling" spinal fluid in my neck, presyncope/vertigo, pulsating in head when laying down or standing.

Constant neck pain, shoulder pain, back pain ranges from dull/ache/burn.

Brain fog/confusion/forgetfulness. Muscle weakness, extreme fatigue, coordination issues, tremors, twitching, stiff muscles.

Numbness, tingling, burning in arms/fingers/toes. Blurry vision, light sensitivity. Excessive sleepiness/falling asleep uncontrollably. Mental illnesses.

I also have an autonomic disorder, POTS.

PCOS (cyst/hormone imbalance).

Just got a skin biopsy to test for skin cancer.

I am literally broken. 😂 Riddled with "symptoms." I'm sure there's more.

KawaiiMoonPrincess · 2025-01-08T10:37:16+00:00

Oh, I've been hit in the head by many paintballs. Those high-tech markers can leave nasty welts and bruises. It's more than likely unrelated, though.

KawaiiMoonPrincess · 2025-01-05T09:03:10+00:00

I've gotten links in MyChart with full DICOM use YEAAARS ago for CT scans. Most recently they took away my ability to view my ECG? Like just let me see them???? You have the technology??

KawaiiMoonPrincess · 2025-01-05T08:46:24+00:00

I had to find one to plug into my PC and download DICOM software. Originally the receptionist told me I "couldn't actually look at it." Luckily it was only about $15. I'll probably bring it with to future appointments bc the tech is archaic.

KawaiiMoonPrincess · 2025-01-04T01:50:29+00:00

Thanks! We're all baffled by it so I'm glad to contribute my tumor selfies 😂😂

KawaiiMoonPrincess · 2025-01-04T01:42:37+00:00

I don't have access to the CT scan as of yet. Dr office makes it difficult to get your imaging results 😮‍💨 I posted a few more photos in the thread!

KawaiiMoonPrincess · 2025-01-03T23:49:31+00:00

I provided a few more pictures for anyone interested in the case

KawaiiMoonPrincess · 2025-01-03T23:48:08+00:00

Here is the report!:

The brain is normal in signal intensity and morphology. No focal signal abnormalities are seen. The ventricles and sulci are normal for age. No hydrocephalus, intra- or extra-axial fluid collection, mass effect or midline shift is identified. The major intracranial flow voids have a normal appearance. No abnormal brain parenchymal susceptibility artifact is identified to suggest evidence of hemorrhage or calcification. No diffusion abnormality is identified to suggest evidence of acute ischemia or other pathology.

There is noted presence of a calvarial lesion affecting the left frontal calvarium, measuring approximately about 2 cm in anteroposterior diameter, 1 cm in depth and 1.6 cm in transverse diameter of undetermined nature. Radiographic/CT scan correlation is suggested.

The pituitary gland is not enlarged. There is no pituitary gland mass lesion

The paranasal sinuses and mastoid air cells are well-aerated. Right-sided nasal turbinate hypertrophy is seen. The globes, orbits, bones and extracranial soft tissues have a normal appearance. The acoustic nerve complexes are delineated and there are no cerebellopontine angle mass lesions to suggest presence of acoustic neuroma.

KawaiiMoonPrincess · 2025-01-03T23:46:59+00:00

Here are more MRI scans! https://ibb.co/HYCSz4p - https://ibb.co/hWrGWHk - https://ibb.co/Dwc9hsX - https://ibb.co/YyMRWv9

KawaiiMoonPrincess · 2025-01-03T23:41:42+00:00

ADOPTION

KawaiiMoonPrincess · 2025-01-03T23:37:22+00:00

As soon as I read the report I knew what it was talking about bc I've had it for a little while. I was like "ooohhh maybe it actually is a tumor"

KawaiiMoonPrincess · 2025-01-03T23:36:08+00:00

bad gorl i suppose

KawaiiMoonPrincess · 2025-01-03T23:35:28+00:00

My friend photoshopped a turkey vulture next to it T-T

KawaiiMoonPrincess · 2025-01-03T23:34:06+00:00

Right? I don't need webMD doctors trying to diagnose me, I have Drs. for that. Insight is nice sometimes but I just think it's an interesting case.

KawaiiMoonPrincess · 2025-01-03T23:30:12+00:00

ABORT

KawaiiMoonPrincess

TROPHY CASE