Feeling lost and alone

[julie upfield]

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

[SonW]

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[sofianeo]

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[Author]

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