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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Feeling lost and alone

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Feeling lost and alone

  • This topic has 2 replies, 2 voices, and was last updated 3 years, 10 months ago by sofianeo.
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  • February 24, 2019 at 5:59 am #1178
    julie upfield
    Participant

    Hello,
    I hope this ok and someone can point me in the right direction.
    I am 58 and recent mri found a chiari measured at 5mm and considered normal, at first I thought this my answer only now to realise my symptoms don’t really fit…..This lead me to Eds, my problem is how do I get the gp to test me. All tests are normal and I think the gp thinks my symptom made up.(I am in uk).
    I have had weird symptoms all my life. Here is a list of some diagnoses and below a list of some symptom that I have tried to put in age order.

    DIAGNOSIS
    Herniated tonsils 5mm consider normal
    Various neck and disk problem
    Weak ankles and wrists
    Tmjd
    Frozen shoulder
    Mouth/teeth problems
    Recurrent herpes complex
    Thickened s1 nerve root
    Ibs
    Excema
    Athsma
    Anxiety
    Depression
    Chronic pain
    CFS…….
    Kidney 45%
    Strange liver results
    Spondolysis ages 20 but life long symptoms
    Chronic pain
    weak wrist and ankles

    SYMPTOMS
    Born with twisted foot
    Late walking pecial shoes til 3
    could never run and play etc
    hopeless at ball games
    cannot ride bike or drive car
    Choking fits with sickness and without
    Ecitment causing flare
    Always considered to be flat footed
    Party trick touch nose with tongue
    Clumsy
    Bruise easily long healing
    Feet callous needs removing daily
    Real aversion to heat just cannot function, need to lay down or pass out after bath etc.
    Can’t travel
    Travel sick
    Forever twisting ankles
    Tennis and golfers elbow /frozen shoulder
    Tingling/numbness
    Subflexion of ankles wrist and fingers
    I am 58 and can easily grasp my hands behind my back(I’m considered unfit by gp)
    Heartbeat rises on standing
    Spasms all over
    Restless legs
    All over buzzing pain
    Choking on nothing attacks (feels like throat spasm) (terrifying) and since about 3 yrs
    sleepwalker
    Painful feet
    Painful legs (can spasm on walking)
    Cold feet and nose.
    Always stumbling
    Can’t walk without aggravating or causing a flare.
    Travel causes flare
    Humidity… Can’t function
    Pelvic pain
    Buttock pain
    Shooting back passage pain
    Sex hurt
    A lot of mouth pain
    Dry eyes /mouth hoarse voice
    Always some level of widespread pain
    Swelling /pain above wrist on using
    Swollen fingers especially in the mornings
    Unbearable pain from epidural and merina coil (told both impossible) felt every cut that led to 81 sticthes, was dillerious and blood pressure so high gave me three hours to live.
    Nausea
    No appetite (liquid nutrition but even that becoming difficult)
    Heartbeat rises on standing/dizziness etc
    Humidity/heat bath etc…..I have to lie down and wait for it to pass
    Sensitivity to light and sound
    Confusion in busy places
    Hopeless direction get lost in familiar places
    Tingling/numbness in limbs.
    Can bend my little finger back 90% have hyperextended knees, could always touch floor with flat hands before sI nerve root problems.
    Post nasal drip
    Hay fever
    Allergies
    Forever coughing (can cause pain)
    Popping in ears
    Crunching on movement of neck
    Aniety comes out of nowhere and physical symptoms always worse after emotional trauma.
    just always feel ill
    been told ive lived most of life in flight or fight
    have had visual and auditory diturbances
    double vision when laying down
    words moving on page

    conversation sounds like a foreign language in flare up

    I think I fit the beighton criteria for eds and wonder if I have tarlov cysts and cranial instability
    I wear a bac cervical brace which help lesson travel sick pain on moving dizziness etc, a sacral belt wrist splints ankle supports. I use a walker and a mobility scooter…….and feel a if the medical profession wonder why I need them…..

    I will enclose my mri if I can and would appreciate your thoughts as to whether seeking an eds diagnosis is warranted. Thank you……and how I should go about it.
    not sure how to add mri image but will work it out and send later

    March 8, 2019 at 4:02 pm #6354
    SonW
    Participant

    I feel lost and alone sometimes, too. I work graveyard doing 24 hour towing services in Kelowna BC and I find watching Jordan Peterson helps.

    March 16, 2019 at 1:13 am #6356
    sofianeo
    Participant

    The excellently written article, if not all bloggers offered the same level of content as you, the internet would be much better placed. Really great post, Thank you for sharing this knowledge. Get much more The Detroit Become Human Connor Costumes well in simple one click

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