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Having extreme exhaustion and breathlessness. Suggest

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Practicing since : 1971
Answered : 219 Questions
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 internal 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.
Posted Wed, 4 Dec 2013 in Medicines and Side Effects
Answered by Dr. Varanasi Pundarikaksha 19 hours later
Brief Answer: Metabolic disorder is one possibility Detailed Answer: Hi, I have read your query thoroughly. After going through the vast history since 13 th year of your age, I think of some metabolic disorder as a possibility, which should be further investigated by multi-disciplinary approach in a well equipped medical facility. The team should consist of Physician, Endocrinologist, Cardiologist, and Neurologist with appropriate help from a Biochemist. As you are a potential person, it is high time for the Medical Profession to involve and exercise to do research on this subject. Please do write back for further discussion on this. Regards,
Above answer was peer-reviewed by
Follow-up: Having extreme exhaustion and breathlessness. Suggest 2 hours later
Dear Dr Pundarikaksha, Unfortunately I have not found your response most helpful as you've not suggested any possible outcomes. It may be wise to bring in an endocrinologist however in the NHS system my local doctor must suggest what we are looking for. What sort of problems do you think may exist? Kind Regards, XXXXX
Answered by Dr. Varanasi Pundarikaksha 8 days later
Brief Answer: Multiple problems Detailed Answer: Hi I am very much concerned with your multiple problems. While I cannot and shall not attempt to diagnose over the Internet, a few thoughts that I would like to share with you. You are having tachycardia with breathlessness, since 13 th yr.of life, had pneumonia at 19 th yr, migraine trigger being awake, central sleep apnea and photophobia as well as anal fissure, overactive bladder, stiff small joints. All these things can not be clubbed together to one disease. Though the MRI finding of "Few very small non-specific white dots in the brain substance" may suggest a demyelinating disease. It may be responsible for some of your symptoms. These may be suggestive of ischemic spots or may be autoimmune. Neurocysticercosis will have small cyst like lesions on MRI. Hence, I suggested multi-disciplinary approach, with elaborate investigations and discussions amongst professional colleagues with academic interest and research mind. Regards
Above answer was peer-reviewed by
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