Top Tweets for #BongoUpdate
@petrichor348 @thepoliticalcat @A_affirmations @timzmom Thanks dear! Pelvic congestion scan negative, been id’d as nerve issue. Had problems w med side effects, going through withdrawal since mid Sept. Wrote medical complaint to local MP. Plan to update more when brain & stomach/gut calm. Much love to you all 😽💕 #BongoUpdate
@thepoliticalcat @A_affirmations @timzmom Got private clinic appt for pelvic congestion syndrome in next few weeks. Plan is scan, consultation, & recommendations, then go from there because £££££. Hope to have good news for y’all soon.🤞#BongoUpdate
#BongoUpdate Got referral to interventional radiologist to see if Pelvic Congestion Syndrome causing pain 7-9/10 from waist down. Plan to write MP asking for inpatient admission until I’m well, gotta get speech therapy continuing ed done before any hospital stay. So stressed.
Hi @sophierobehmed! May I ask if this is your article, & if so, I’m curious on a scale of 0-100% how much pain you now have on a daily basis? I might be in a scarily similar situation (since Jan 2019!!). Living in fetal position. My journey: #BongoUpdate https://t.co/I03zWvRMNX
#BongoUpdate Neurography normal except small fibroid & no mention of pelvic congestion seen on previous MRIs. Pain dr to try injections -start with tailbone, maybe along both sciatic nerves, see how I respond, & go from there. Oh, and class to “learn to better tolerate pain.”
My GP’s Answer: Rx’d check for UTI/cultures, said if any changes & can’t get in touch with them within 6 hours, go to ER. Obv follow advice of your own medical professionals, just sharing the resolution for my particular case. Many thanks to all who responded. 🙏😽🧡 #BongoUpdate
#BongoUpdate Neurography went fine. Was like regular MRI. They sent ambulance w/ stretcher & Entonox for transport plus wheelchair ride to clinic. Feel sore & exhausted. Resting & taking it easy. Dr to phone on 21st w/ results & discuss treatment plan. Finally -moving forward! 😸
#BongoUpdate Neurography moved up to next week -yay! Follow-up phone call with Pain Dr who ordered Neurography moved up to 2 weeks after scan -yay x2! Bad pain flare Sunday noon until this morning had me curled up on sofa entire time. Kinda nervous about traveling & 2-hour scan.
#BongoUpdate CatMom’s Neurography scheduled. GP arranged transport with stretcher and equipped with gas & air will so hope to travel in more comfort. Dunno if they’re sending a whole friggin ambulance. No idea what will show up at my door. It’s a surprise! 😹
CatMom is getting referred for a neurography to try to figure out why sacral nerves aren’t working. Yay! #BongoUpdate
@24shaz Thanks. I post med stuff to #BongoUpdate if you care to follow my journey. Often tag #neisvoid looking for people with similar experiences. I appreciate you sharing. 🧡
#BongoUpdate New MRI Monday. Have every single red flag symptom of cauda equina & no diagnosis. If not that, tell me what it *is.* Nerve damage only in most difficult place to injure (sacrum)? Nerve conduction study says nerve damage & MRIs say normal? Makes no sense. #NEISvoid
#BongoUpdate Uro-neurologist said MRIs normal: no damage, disease, or infection. Only the nerve conduction study shows spinal nerve damage. Should stop looking for diagnosis and instead focus on symptom management. I can’t accept this. Feel like having a mental breakdown.
#BongoUpdate I wonder what nuclear options my GP has. If she’s the central hub & director of all my care, there must be something she can do? I don’t know how to navigate UK healthcare.
#BongoUpdate Going to discuss all this with my GP tomorrow & ask her advice too. She’s been actively supportive. Strongly feel she’s on my side. Her hands seem relatively tied though. Wish it wasn’t just me & her begging these other asshat drs for help.
#BongoUpdate Local neuro “doesn’t think there’s compressive injury from fall & doubts missed cauda equina & conus medullaris on MRI.” Uro-neurologist brought up those again independently! Plus local neuro entirely missed nerve damage in 2019, said was “coccydynia.” I’m scared.
#BongoUpdate I shouldn’t have invasive spinal tap when no one’s bothered to review/repeat MRIs to pinpoint diagnosis in light of nerve study that describes areas of damage. Cauda equina & conus medullaris are emergencies. New MRI requested, still waiting weeks, no appt yet.
#BongoUpdate New local neurologist letter omits red flag symptoms. Says “doesn’t know why such bladder change since April ‘19” -uh, status same now as then. S2-S4 nerve damage confirmed in uroneurologist nerve study letter I showed him all affect urinary tract. This is negligent.
#BongoUpdate Livid about excruciating pain & bullshit foot-dragging drs. About to send email cc’ing everyone & anyone who can make life difficult if my case doesn’t move forward pronto, & that’s a long list of people to cc on one email. Dunno if it will help or hurt? Thoughts?
@5tarblood @Google @googlesupport @madebygoogle #BongoUpdate Please RT! He’s the sole carer for his ill wife! Needs phone stay in touch. She can’t yell across house or always get upstairs, so phone is *vital.* Some people don’t understand importance of phones for safety. Pls fix this Google! #neisvoid #handicap #CatsOfTwitter
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