I'm so dissapointed in the doc who has been my best PCP for years #NEISvoid #DisabilityTwitter #EhlersDanlosSyndrome I have cci and it got significantly worse the last 2 months. I've tried to deal with it myself, but its been a major issue for pain, mobility & neuro symptoms #eds
that nothing helps. we changed from a pain patch to an injection because it give me more relief, but my symptoms persist & cause serious limitations i didn't have before. my PCP told me I had to do PT to get scans. I said okay, because this has happened before. I need 6 weeks
to get scans, which is a lot. my 1st pt was terrible [and I posted about it earlier] and my next pt is somebody I've never been with, so idk if they know eds. the only PT who I know, like, and who knows eds is booked through December. I called insurance to ask about getting scans
before PT. they told me my doctor never requested scans. how did he find out I "need" pt before scans? did he just assume? idk. I called the office yesterday and explained the whole situation and that I really want scans BEFORE pt & that its possible. my doc got back with this DM
"Hi. I'd like you to continue working with the physical therapist at least a few more sessions. Physical therapy often causes pain initially - the goal of PT is not to reduce your pain right now, but instead to strengthen you so that pain flares will be less likely in/continued/
the future. It really isn't a hoop I want you to go through so that insurance will authorize an MRI - I think physical therapy is the intervention most likely to give you long-term benefit."
This response has a lot of issues IMO. I never said I don't want to do pt, I said I need
This response has a lot of issues IMO. I never said I don't want to do pt, I said I need
scans before PT [to the 1st sentence]. Also I know pt usually causes pain, but this is an extreme level of pain and a slew of crippling symptoms. its not normal or safe for #cci and #eds. also PT is my best long term treatment? I disagree. it can help with some things but always
alongside pain meds/procedures. Ive been in pt for 5 years and it hasn't cured me or stopped progression. Additionally a PT who doesn't know eds can seriously injure an EDS patient, and its highly unsafe to do PT for neck instability without scans. Also he doesn't want me to jump
through hoops for insurance? I WANT TO DO IT, I'm asking for it! and its not that hard anyways. I messaged back explaining all my symptoms, my issues with the physical therapists, and that this isn't normal eds pain. I explained that its not too hard to get scans either. I'm so
stressed and upset, worried this means he is having less high standards [i always loved him because he would listen to me and let me ask for things]. I'm going to instead ask my pain doc for a script for scans, as I feel so unsafe. ill link the PT post below #EhlersDanlosSyndrome
#NEISvoid #DisabilityTwitter #DisabilityPride #medicaltrauma #EhlersDanlosSyndrome #hypermobility #cci #PhysicalTherapy
pt experience #NEISvoid #DisabilityTwitter #EhlersDanlosSyndrome
https://twitter.com/FightAbleism/status/1456780548387454978?t=wA8LbxbNG6AYFXuL-CsJtQ&s=19
mom making excuses for my doc saying he could just be having a bad day emotionally. when peoples health and safety are on the line THATS NO EXCUSE. doctors have so many resources. in some jobs it may be understandable that emotions interfere with work, but not in medicine
update this doc who has historically been my best doc, completely ignored me and dismissed a serious safety concern, so I ended up asking my pain doc for help and he is helping no question, and fit me in tomorrow #MedicalNeglect #NEISvoid #EhlersDanlosSyndrome #DisabilityTwitter
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