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Major update conclusion

#Doctors #Diagnosis #CTScan #MRI

(Part 2) So, where does this leave us with all findings? That's the thing. . .I got a strange call from a sympathetic receptionist a few days after the neuro appointment who seemingly understood my situation. She told me that he had reviewed my neurology report & was very interested in my case. She understood the medical gaslighting that was going on & she asked me, did your previous geneticist do a connective tissue panel? I gave the long answer of no. She told me he would like to see you when all these appointments are over because he has some ideas as to what we are dealing with here. Who was this person? The neurologist personal geneticist. All that's left besides pt is neuro follow up & I'm going to see this geneticist who is interested in my case. But you wanna know what makes him standout to me? His clinic was established as recently as 2021! 0_0

The original genetic testing didn't cover disorders of collagen function & I think I know what "some of his ideas" are. . .

All I'll say is watch this space. Summer is about to HEAT UP! Peace out everyone.


Major update

#Doctors #Diagnosis #MRI #ctscans

(Part 1) Hi guys & gals. Some very interesting developments have surfaced over the last few weeks & admittedly some worrying things. firstly, the neurologist appointment went fine but there quite a few new diagnosis that where made. Firstly I have conjugate gaze palsy, an Astasia Abasia due to what he thinks is FND, however at the end of his report he stated an unspecified ataxia. Your guess is as good as mine on that one. Lastly, he diagnosed me with a dilation of my ventricle that causes accelerated aging i.e dementia. He wanted to send me to physical therapy & they where nice so that's good. I saw the spinal specialist & this one. . .this one sent a chill down my spine literally. The examination went fine & he recommended botox injection from his clinic if the current rehab facility doesn't succeed. My poor mom said "we will exhaust all other options." That's what scared her, what scared me was when we talked about how this grade 2 cerebral palsy came out of nowhere. How did this cp flare up like this? He has no clue, well, I MIGHT & I DON"T THINK IT'S CP! I decided to join labcorp & was looking at previous blood results when I stumbled across one taken 10 months ago that showed my A/G ratio, sodium, carbon dioxide, hematocrit, & blood urine nitrogen where all off. It could have something to do with my adrenals & kidneys. Spinal wise they found cervical disk denegation, stenosis, bone spurs all along that region. Then the ENT told me to get more imaging & I had to wait another week because insurance... We found there was a laryngocele & diverticulum. There was no cancer which was our initial concern, instead the Ent said it was rare & congenital.

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Can't sleep, MRI tomorrow

Going for an #MRI of my spine tomorrow. Very anxious about this! I hope they find something they can cure! I hope it isn't something fatal and I hope it isn't nothing. Nothing is more frustrating than having nothing show up in bloods, or scans!


Trying to find hope

I got a lumbar puncture yesterday and it was absolutely horrible. I knew there was a chance it would show up clear, and it did, but I’m so upset. I felt like it was so scary and painful to do, just to feel like we’ve gotten no further. I’ve had a EEG and an MRI. Both clear. I’ve been sitting here just waiting to them to figure out what’s going on and I’m starting to doubt I’m sick. Maybe I’m just crazy. Or incredibly lazy (unintentional rhyme)! I don’t know how to believe myself and I’m losing faith in my mom that she has the right diagnosis.

#ChronicDepression #losinghope #MedicalMystery #LumbarPunctures #MRI #EEG

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Normal MRI… what now?

My MRI results came back as normal & ENT have discharged me.

I’m not quite sure what to do. Does this mean I have to deal with migraines for the rest of my life now? My hearing randomly going? The pain and mental attacks from the increases during colds etc?

I know, I should be grateful that it’s normal. But I’m just feeling lost and frustrated. There’s no plan now other than just having to deal with it.

#Sinus #ent #MRI #symptoms #ChronicPain #ChronicMigraines #Hearing #MentalHealth #Feelinglost #normal #WhatNow

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Paying for an MRI/MRA

Hello Mighty Community! Does anyone have any advice on how to pay for an MRI/MRA? My roommate needs them. She’s on her parents’ insurance still but no one in her family has been sick this year so there’s been no movement on their deductible. It will cost her 6 months of our rent to get these done, which she can’t afford #ChronicIlless #MRI #Finances #Insurance #Health #Brain #HealthInsurance



Hi im having a brain MRI this weekend and wanted to know anything i should be prepared for. I’ve had one years ago but this one will be longer i think a hour atleast 😭 im very nervous to say the least my mom has chiari malformation and we think I may have it to #ChiariMalformation #MRI #Advice


what now

just been diagnosed with fybromyalga just getting over that now today had to have brain #MRI spotted by optician pressure on optic nerve how do I keep going

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Hand weakness and trembling

Has anyone else experienced hand weakness and tremors after a car accident? It's been affecting me for over 2 year's now and I've already seen a neurologist about it, neuromuscular specialist too. They want me to have an MRI done since they are suspecting it's my brain. They don't believe it has anything to do with my accident. But I'm not so sure. A few days after we were rear-ended I had numbness occur on my left side and lower back. It stayed that way for months. Also it sometimes comes & goes. I was left with this tremor and weakness. It frustrates me because it causes me to drop things and it shakes uncontrollably sometimes. I have to mention too that I also had a mild traumatic brain injury from the accident. I didn't know that was possible without hitting your head but when my neck whiplashed, it must've happened then. I have gotten whiplash before from other rear-end accidents.
The MRI had to be cancelled due to my son's illness. They said it'll be necessary to inject dye into my veins in order to get the information the Doctor needs about my brain. It frightens me. I react so easily to medications & have allergies.
What should I do? Wait and see if it worsens or get the MRI to get a diagnosis. I am no stranger to mysterious ailments and prolonged diagnoses, I have been invalidated by Doctors and suffer from C-PTSD/ PTSD. I have heard that medical PTSD is a real thing too. I suspect I have it. I lack trust in new physicians and get anxious about my treatments.
Thanks for taking the time to read my message.
#CPTSD #Anxiety #MedicalPtsd #handtremor #mriwithdyeinjection #MRI #trustissues #ChronicIllness

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Anyone else keep things to themselves in hopes it won't upset others?

Does anyone try to keep their emotions or physical pain to themselves?
I try not to be a burden, but then my husband will try and make me feel better, but also make me feel worse at the same time. For example, he will tell me that im getting worse as I'm falling more, cursing more etc...but then 30 seconds later will blame it on the fact I'm not "physically fit" or that I have a "bad/poor" nutritional health 🙄.
So today hasn't been a walk in the park like it would be for some. I've laughed, I've cried, I've even thought about the tempting idea of starving to see if that would help.
I slipped down the stairs for the 2nd this this week, and its only Thursday!
I'm still awaiting my results from my MRI I had a few months ago. Im praying I don't have any underlying such as #MultipleSclerosis and it is just my #Fibromyalgia playing up.
My heads a shed, and I'm not sure what to do. I'll survive this i know i will. But like I said above, i hate to be a burden. And I'm sorry if I've upset anyone.
#mentalhealthmatters #Depression #Anxiety #Upset #MRI #PTSD #alone