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.

Dear Dr Bain, Thanks for your quick reply. 1) I would very much doubt I've had a heart attack as I've been seen by my cardiologists around 10x over the last 3 years and had numerous snapshot and extended ECGs - all of which are clear. 2) It also seems unlikely that I could have raised (even temporary) ICP as the brain MRI was clear of this. Surely this is something that would show up? 3) I don't think sarcoidosis fits with my symptoms. My breathlessness seems to be lead by heart rate and I do not have a cough or generic lung pain. I do not have any visible leisons on the skin. 4) Its the same with the auto immune conditions. ESR was last 2mm/hr (2-15 U), blood counts are normal with white blood count 4.1 x10^9/L (4.0-11.0 U). Lupus sort of fits and it wouldn't hurt to test anti-nuclear and anti-DNA antibodies. 5) Rheumatoid arthritis was 'negative' [I can't remember what that corresponds to in numbers]. 6) HLA27 screening may be useful, although does this testing have another name? I can't find resources on it so wouldn't know what to request. 7) I've had a chest xray 5 years ago but they were just looking to see if my lungs were clear. If there was a growth, back then it would have been miniscule anyway. I've never had any form of imaging in the abdomen apart from a sigmoidoscopy. Both of these seem like a good idea, and it does seem to fit the pattern of 'randomness' that a tumor could create. 8) I may seek the second opinion of a neurologist regarding my brain MRI, but have requested the raw files in the mean time. 9) I don't think they're referred to as internists, or even that 'general specialists' exist at all in the NHS in the UK. I'm not sure who I would be referred to, but it does seem a good idea to have a generalised team lead the investigations. This has been part of my problem so far, none of the specialists are working together and its no one's job to look for conditions spanning multiple specialities. I will let you know of any developments, however its likely the question will automatically close before this. Kind Regards, XXXXX