Question: I've been in the NHS system (UK) for 3 or so years and the doctors have literally run out of ideas. I'm looking for outlandish ideas, clues or hints that pop into people's heads. Good luck.
Male, 21, health was perfect until ~13, was an elite athlete. First noticed a decrease in exercise tolerance around 13, if I hit a certain threshold of exercise my heart rate would just sit at 180/200
at not come down for ages. Accompanied with breathlessness.
Cardio was the only symptom until 19 when I picked up pneumonia for a month. I was extremely ill and living on my own was too ill to even get help. Lasted about a month, no treatment. After that
everything else described below started one after another. Most crippling thing is overbearing, extreme exhaustion. Randomly lets up a few hours a week with no pattern.
Cardio:
* Threshold decreased from ages 13-20 until *anything* would cause a
rapid heart rate and breathlessness.
* Holtier monitors show no arythmia, ECG clear, exercise tests confirm symptomns.
* Treated with
ivabradine 5mg 2xdaily, is a tradeoff with exhaustion.
* Working diagnosis is sinus tach, awaiting EPS study to see if there is an 'easy' fix.
Neurology:
* Almost permanent migraine, rear left
* Can't find any trigger other than being awake
* Ineloquence/forgetting words. “Mental cloudiness”
* ANS functions done, ice water, tilt table and 3 min grip passed
* Brain MRI done: "Few very small non-specific white dots in the brain substance"
*
Neurologist dismissive
Sleep:
* Diagnosed with UARS, although CPAP suggests central SA
* Undergoing CPAP
* CPAP suggests central sleep apnoea
* AHI varies periodically in weeks between 0-1 and 2-3.
Short periods between sleep cycles removed.
* Breathing stops for 16-30 seconds, no restriction of flow or leakage
* Sleep clinic has a 9 month waiting list for next appointments, can't rely on anything from them
Eyes:
* Very strong photophobia
* Constant 'white noise', like interference on an old tv
* Physiology of eyes fine, all tests passed
* Light sensitivity and white noise varies dramatically
* Maximum focal distance shifts inwards at random. Sometimes can't focus after 5m, sometimes 20m, 50m, other days 'infinite'
* Awaiting neuro-opthalmology
Digestive:
* Developed long term IBS from 18-21. Seems to be clear now though.
* Stomach emptying/transit would just STOP, no particular trigger.
* Keep developing
antibodies to milk, yeast and wheat even after 6-12 month exlusion diets (IgE).
* Very transient, comes and goes as it pleases.
* Permanent anal fissures. Diet is excellent, topical solutions have no effect. Botox injections little effect, nothing can overcome the XXXXXXX sphinter spasm. But then randomly it relaxes itself for
a few days.
* "Don't know"
Bladder:
* Detrusor over activity (
overactive bladder)
* VERY overactive during some periods, no apparent trigger.
* Up to 20x a day inc 4x at night. Other weeks almost normal!!!
* Unresponsive to previously effective detrusol XL 4mg mr
* Currently
mirabegron 50mg daily mr helps a bit
* IVABRADINE HELPS SYMPTOMS??
* "Don't know"
Rhumatology:
* Calcium deposit in wrist, other deposits in soft tissue
* Other 'soft lumps' on trunk and neck. One excised and described as a lipoma
* Small joins very stiff, require a lot of mechanical force
* Constant ache/pain in fingers, getting worse
* No inflammation in blood tests
* Awaiting rhumatology
None of my symptoms fit the text books or what anyone has seen so far. Take 3 minutes if you can to share my case with a colleague, my life is on hold. I'm an award winning entrepreneur and engineer -
who can barely keep ahead of housework.