My son has been ill for nearly two years and has got progressively worse over that time but the doctors we have consulted simply don’t have a clue what is wrong with him.
His main symptoms are severe fatigue, daily afternoon slumps, strong and fast beating heart, digestive problems, low temperature, raised ESR & CRP, strange long straight yellow patches on the skin. These yellow patches don’t itch but appear everywhere including the legs, arms and centre of his chest.
Does anyone have any ideas – particularly about the yellow patches? We’d be really grateful for any help.
Did your son have jaundice (skin turning yellow a few hours after birth) shortly after he was born? Have a complete serious of blood work drawn on him. If all the blood work they do return negative...meaning everything according to the blood work is normal. Have them do specific test on his liver, his intestines and bowels. Fatigue could be from lack of iron to a heart murmur to any hosts of alignments. Since it has been 20 years and still no finale as to what he has....it is longgggggggg overdue that you find the answer you so desperately seek.
Per each problem you have listed, a test should be ran. Blood work to rule out iron defciency, blood work to rule out jaundice, blood work and heart scan to rule out heart murmur or an enlarged heart, blood work to rule out anemic due to low blood pressure.
You son has something terribly wrong with him. Please leave no stone unturned until you find someone who is willing to find out what it is. Change doctors, go to the closest University Medical University nearest you and talk to the Professor....students oftentimes can find things your high cost hospital doctors can't....after all they are training to become doctors. DON'T GIVE UP, KEEP PRESSING FOR AN ANSWER.
Good Luck and let us know how you do. Will keep you in my prayers.
Hello Faded Rose. I may have been confusing in my original message.
He has only been ill for two years not twenty. We've been to see an eminent endocrinologist in Oxford and they said he had all the symptoms of Addison's disease except that his cortisol level wasn't in line with what it should be for them to diagnose Addison's under the guidelines of the UK National Health Service. So they didn't! He was discharged and referred on to a gastro enterologist who he is seeing on September 8th.
We'll keep pushing them and I'm sure we'll get there!
It is possible that he is accumulating the iron in organs, specially in the liver and not in the blood. Was he tested for ceruloplasmin gene mutations? (aceruloplasminemia) Was a liver biopsy done? Wilson disease?