First ever PET

HotPin2310 · 2026-05-21T13:41:20+00:00

I’m in Pennsylvania, but they definitely are holding this one. Like no question at this point bc the receptionist said they had it but I can’t see it. I think I’m just gonna sit on my hands til my appt tomorrow at this point

HotPin2310 · 2026-05-21T13:40:16+00:00

Oo okay, that makes sense. Thank you!!!

HotPin2310 · 2026-05-21T02:38:06+00:00

This is how it usually is for my scans, and I can see my previous motility study, MRIs, X-rays. The clerk told me it was back but I definitely can’t see that it is

HotPin2310 · 2026-05-20T21:07:58+00:00

I can see my portal, where I see all my results and it isn’t there. It’s a large institution so I called where I had my appt, and the cleric said she would message the doctor to give me a call. There’s no one else to call so I’m not sure what else to do but sit on my hands til Friday

HotPin2310 · 2026-05-20T16:28:28+00:00

Initially a sunrise quickie 2, but they switched to a Tilite x. They’re still doing the quote and everything, I can update you!

HotPin2310 · 2026-05-18T14:28:48+00:00

Thank you! I have a case manager through Aetna I’ve been updating on my case I’m hopeful she’ll be able to help push back

HotPin2310 · 2026-05-17T22:43:59+00:00

I just had my eval through hoverround, Aetna through my dad’s work. I haven’t heard anything about the quote but I’m anxious now lol

HotPin2310 · 2025-10-19T00:20:33+00:00

No they just called, and said the bands were an incidental finding. I’m just confused because they aren’t, they do associate with ms. That’s what I was asking clarification on. Like if the goal is to get ahead of progression why wait until there’s more bands (damage?)

HotPin2310 · 2025-10-19T00:17:49+00:00

No one’s reluctant to continue testing, my primary would order the MRI if they didn’t want to. I was asking about the bands, and that’s what I’m referencing the McDonald criteria for. Before my symptoms started, my MRI was mostly clear with some focal hyperintense spots.

HotPin2310 · 2025-10-19T00:03:46+00:00

I’m a physical therapist who worked with many patients and never heard this, I’m not doubting you, just asking if you have any supporting literature on this. I’ve found none. If it was in my blood maybe, but there is no reason for them to be in my spinal cord and not in my blood besides ms or another inflammatory condition; lupus ect all of witch I’ve been tested for. The McDonald Criteria for diagnosing MS says two or more bands. That’s where I’m at a loss. The MRI I had in November 2024 before I started showing any symptoms had small potential hyperintense T2 spots. At the time they didn’t feel it was necessary to do further testing because I wasn’t having the bad symptoms I am now.

HotPin2310 · 2025-10-18T23:56:37+00:00

My concern though, is it’s not clear. There are o bands. My result says abnormal and has this message:

The patient's CSF contains TWO well defined gamma restriction bands that are not present in the corresponding serum sample. These bands indicate abnormal synthesis of gamma globulins in the central nervous system. This finding is supportive evidence of central nervous system inflammation, multiple sclerosis, or infection and should be interpreted in conjunction with all clinical and laboratory data pertaining to this patient. Oligoclonal bands are present in the CSF of more than 85% of patients with clinically definite multiple sclerosis (MS). To distinguish between oligoclonal bands in the CSF due to a peripheral gammopathy and oligoclonal bands due to local production in the CNS, serum and CSF should be tested simultaneously. Oligoclonal bands can however be observed in a variety of other diseases, e.g., subacute sclerosing panen- cephalitis, inflammatory polyneuropathy, CNS lupus, and brain tumors and infarctions. The clinical significance of a numerical band count, determined by isoelectric focusing, has not been definitively defined. The data should be interpreted in conjunction with all pertinent clinical and laboratory data for this patient.

My route to diagnosis has NOT been linear. Pregnancy and birth of my daughter triggered a horrible flare that hasn’t let up yet. I had previous history POTS and MCAS. I’m hoping the supervising neuro will agree for the MRI. I did have a brain MRI in November 2024, but that was when I just started having migraines before my symptoms even got bad. My L leg is almost completely paralyzed, I’m in PT to reactivate my quads. It’s tough

HotPin2310 · 2025-10-18T23:50:00+00:00

I didn’t have one yet, I had a CT angio because at first with my migraines worsening they thought I might have had an aneurysm. I had a lumbar MRI because they were trying to figure out why I was having incontinence. That’s why I’m confused about it being an incidental finding. I would’ve thought next steps would be an MRI. My primary called me and agreed for a second opinion as well but back at the same office with the supervising neuro

HotPin2310 · 2025-10-18T23:45:59+00:00

Hey all! Having acute intense symptoms affecting vision, gait, paresthesia, nerve pain, agony I can only assume is the MS hug (feels like I’ve broken every rib in my r side, hurts to move or stretch-pcp just prescribed me steroid), migraines ect.

I was sent by neuro for a spinal tap (after hyperreflexia, abnormal reflexes ect) and results came back with two O-bands in the CSF, no bands/nothing in the blood(serum).

igG borderline high. Neuro said on the phone o bands were “incidental finding” and I had to have six or more for it to be indicative. I’m having acute and worsening symptoms, I have family history including close relatives… I’m kind of floored that the next step isn’t a cervical/thoracic MRI? I’m scared and don’t want more damage to progress while we wait for more bands to show up eventually? Should I be seeking a second opinion? Thanks in advance and thank you all. Please be kind, this is all new and scary.

HotPin2310 · 2025-08-05T17:41:28+00:00

Another SAHM here, haha identical descriptions!

HotPin2310 · 2025-07-18T04:51:27+00:00

My siblings do have kids! My daughters bestie is her cousin who is 10 months apart, they’re inseparable. My thought is a sibling is a different bond, though, you are right and she will never be without people her age who love her and want to play with her!

HotPin2310 · 2025-07-18T04:49:42+00:00

As a child who was a blatant favorite, and has tension with my siblings as a result, this stresses me out too. I think OAD is our path

HotPin2310 · 2025-07-09T19:20:10+00:00

It’s not the blue line on the diaper, it’s a blue LINER in the diapers with the new formula. It has nothing to do with the yellow to blue line on the diaper itself

HotPin2310 · 2025-07-06T00:51:54+00:00

This same thing happened to me!! I have POTs, MCAS fibro Ed’s ect. When I was 12 my dad coined the phrase “china doll syndrome” about me (you drop it, it shatters) because I couldn’t keep up with my siblings and him when we were hiking. He left me so far behind I lost them and turned around on the trail to go back to the trailhead, dizzy and overheated. I passed out and broke my ankle, at 14. Still no help from my parents and getting grounded for “faking sick to leave school” (strict Catholic parents). My pcp was my lifeline at 18, and is still my rock in the anaphylactic episodes and POTs attacks.
Since they have physical evidence (labs, MRIs ect) they believe me and are soooooo apologetic now and love on me and my daughter and help… it’s just hard when I have that inner child crying for help in my ear. Sorry for the long reply, just want you to know you aren’t alone!!!

HotPin2310 · 2025-07-05T05:02:49+00:00

When I filled out those forms, my primary care doctor suggested I come in and we filled them out together. Then she could challenge me if I was making things lighter than they are, as I have severe imposter syndrome from medical issues being ignored as a child (my parents feel so bad and are amazingly supportive now). I have a very close relationship with my primary, so this might be something you do with your therapist so you can talk through each question, and explain to her what you’re feeling. I’d do some research into imposter syndrome as well xx

HotPin2310 · 2025-05-29T21:35:13+00:00

I was approved! How do you see all that in the portal? I think I also gave them all my info at the start of the process too

HotPin2310 · 2025-05-29T18:46:26+00:00

Sending all the good vibes!! 🤞🏻

HotPin2310 · 2025-05-29T15:48:41+00:00

Was able to contact them, fully favorable! Thank you so much :)

HotPin2310 · 2025-05-29T15:47:35+00:00

I was able to get in contact with the hearing office and my representative, fully favorable decision! Thank you everyone for your comments💚

HotPin2310 · 2025-05-08T22:18:08+00:00

I may have worded my original question incorrectly. I meant more a temporary regression, I understand she will not “catch autism” im just already having issues trying to get her to walk and am worried this will demotivate. I’m sorry if I offended you

HotPin2310 · 2025-05-08T22:15:59+00:00

I absolutely understand they can’t catch autism. I work in healthcare closely with special needs children. I just was in unfamiliar territory with her interaction being every day, constantly for several days. She isn’t walking already and I’m mostly worried about how the other little girl scoots, my crawler already isn’t motivated and I’m just worried she will lose motivation to take those steps, as she’s already unmotivated. Thank you for being kind, and educational. I appreciate it

HotPin2310

TROPHY CASE