Median Arcuate Ligament Syndrome

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    Undiagnosed autism and using my clinical encounters to improve my communications skills

    Part 1 of 2 I received a late Autism Spectrum Disorder diagnosis in May this year, aged 36 at the time. So now I feel I have been given explicit permission to have ”special interests” – one of which is “communication used in healthcare settings” and the topic of this reflective narrative piece on how I have used my journey navigating through the healthcare system as a form of “therapy” teaching me to learn how to socially interact and communicate better.    I currently have no formal credentials, however I hope that my vast lived experience as a highly complex patient combined with the fact I am currently studying for a Masters degree in Clinical and Developmental Neuropsychology will at least give me a layer of credibility in my reflections below.   In fact, I had previously spent fifteen years under a community mental health team, misdiagnosed with Emotionally Unstable Personality Disorder and a plethora of other psychiatric misdiagnoses. No one, myself included, ever considered that I am Autistic until I learnt about #Autism as part of my MSc Course.    Fundamentally it was in my highly drawn-out diagnostic odyssey and fifteen years of physical symptoms battling to seek a medical diagnosis within the biomedical model to explain my vast array of disabling physical symptoms, where I truly became interested in healthcare communication skills.   It may seem to others I am just collecting “labels”, however my multitude of diagnoses have led me to a far better understanding and self-acceptance of myself as a human being, as well as developing a vast toolbox of self-management skills to help improve my own health and wellbeing away from the medical system.   I remain highly traumatised by the harm caused by misdiagnosis1.  To date, my current list of diagnoses are: hypermobile Ehlers-Danlos syndrome (hEDS), Mast cell activation syndrome (MCAS), Median arcuate ligament syndrome (MALS), Dysautonomia, Complex Post-Traumatic Stress disorder (C-PTSD), Obsessive Compulsive disorder (OCD), Autism Spectrum Disorder/Condition (ASD) and Premenstrual Dysphoric Disorder (PMDD).  On the way home from my ADOS and Autism Diagnostic Assessments in May, I never realised until that point in time how my private medical appointments have been “therapy” for me.  My physical symptom onset really started in my early 20’s.  However It took a long fifteen year battle and struggle of medical invalidation and disbelief until I was finally believed and diagnosed in February 2020 with hypermobile Ehlers-Danlos syndrome.     My reflections here on my healthcare journey and how validating the private appointments were, where the clinicians actually took time to listen and carefully go through my complicated symptoms rather than a very brief ten minute consult where I was just brushed off.   I always have been exceptionally good at “masking” and people always tell me “you cope so well”. Now I am aware I am Autistic this makes so more sense.  However to me personally, communication is an area I know I coherently struggle with, even if others do not think I do.  I struggle communicating my ideas and explaining what I mean and thinking how to explain in a way other people will understand my key points. I struggle with huge anxiety just being around other people and talking to other people.  I struggle to remember what I think I need to tell someone else. I even script out and plan conversations before-hand.    I struggle with not being able to formulate my ideas in a concise and coherent manner.   I struggle with phone calls where I cannot detect the very subtle non-verbal communication in face-to-face interactions. I struggle with the frustration of the exhaustion of explaining things but other people not taking away the key ideas I tell them I want them to hear.    I have never received appropriate psychological therapy (and certainty not in a trauma-informed way) for the level of psychological difficulties I have and the psychological therapies I did receive caused more harm than the good they did.   So “therapy” here, more generally within my healthcare appointments – is terms of the validation of the difficulties I perceived I have as well as a very expensive “course” in “how to improve communication difficulties”.  I faced so much invalidation and cruelty and disbelief from the NHS, so with my private appointments in a nice clean, pristine, quiet calm setting, I have felt very validated, listened to and cared about.   I also developed an interest in the differences in quality of care between NHS and private sector.  Everything I do I am making some kind of comparison observation or learning something, or researching – its exhausting!!!  There has always been some control with my private appointments – I get to know how long the appointment will last, private appointments hardly ever run late, it

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    Pain.

    We all just had COVID and my chronically ill body is not doing well. I am in a major flare of all my conditions. Today my body just hurts and feels heavy. Nothing makes it feel better. I can barely fet out of bed and need my cane. It all just hurts. I hate days like this and get easily discouraged. Sometimes this goes on for weeks and ruins everything. I don't even have the energy to force myself to try something else. So I just binge TV and lay here with a heating pad and trying to sleep the pain away.

    It all just hurts.
    #Endometriosis #PosturalOrthostaticTachycardiaSyndrome #hypermobileehlers-DanlosSyndrome(hEDS) #ChronicMigraines #MALS #TBI #MastCellActivationDisorder

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    Newly diagnosed

    #ThoracicOutletSyndrome

    Hey everyone! i was recently diagnosed with venous thoracic outlet syndrome after struggling with a horrible DVT that has not gone away as well as constant nerve pain, numbess in my face, arm, and hand, and swelling. It has been so scary for me. I will most likely have to get surgery because it is so bad. I also have ehlers danlos syndrome and all of the comorbidities that come with it. I was wondering, for anyone who has both, is it possible that this puts you at risk for more vascular compression disorders? I have so many unexplained health issues and I have been researching other vascular compression disorders and I am really wondering if this is something I should bring up to my vascular doctor (things like MALS and SMAS). What are your thoughts? Do you have more than one? #EhlersDanlosSyndrome #EhlersDanlosSociety #MedianArcuateLigamentSyndrome #smas #MALS #vasculardisorders

    Question

    Have you had MALS surgery yet?

    I’m curious to see who has had MALS surgery, who has had redo surgery, and what you’re current #MedianArcuateLigamentSyndrome status is! Let’s go through this #Together ♥️

    #MALS #abdominalpain #ChronicPain #epigastricpain #chronic #nutrition #Pain #nause

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    POTS/EDS/MALS

    Does anyone else on here also have EDS or MALS? I think I have MALS, and I have a mild form of EDS along with my POTS. Getting checked for MALS this month, fingers crossed its something fixable. Does anyone have any tips on how to deal with the subluxations that come with EDS? #MedianArcuateLigamentSyndrome #EhlersDanlosSyndrome

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    I never thought #ChronicIllness #raredeasease #MALS

    if you asked me 10 years ago or longer I never thought I would be living with a rare chronic illness. I never thought I would be as tired and filled with negative emotion as I am feeling lately. I am tired. of being in pain, depending on people, it's too much..

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    can anyone relate #symptoms #relate #discussion

    so does anyone have symptoms like body pain , tingling in the hands and feet, shortness of breath, feet pain and leg pain more on the right side.. well body pain more on the right side? after being diagnosed with Mals and having lap surgery? #MALS . doctor says there isn't much compression which is good but then what about these new symptoms. please help?

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    Gastro doctor #Gastroparesis #MedianArcuateLigamentSyndrome #Spoonie #Doctor #Tips #EhlersDanlosSyndrome

    New appointment with a gastrointestinal doctor that I haven’t seen yet. I’ve been Diagnosed with gastroparesis, but due to the coronavirus, I have not been able to see this doctor because of the fact that he is four hours away, nervous to go see this new doctor especially because the plan with my doctor last time was to get G/J tube placed, any tips for moving forward with this or just talking to a new Gastro doctor would be greatly appreciated