Well, that might be a little bit harsh but I still do not have any answers, or anything more than a loose plan, regarding my blood and bone marrow problems.
In short, my blood tests since roughly 2001 have shown a downward trend in all the key components that make up blood; haemoglobin, platelets and white cells. As well as the occasional abnormality just for the hell of it.
The reasons for this are still VERY MUCH unknown; there is no research that associates my bone marrow problems with Pachydermoperiostosis. So I am either ridiculously unlucky and have two very rare condition or I am pretty much unique in the severity of my Pachydermoperiostosis as there is no medical evidence of this problem.
The plan now is very simple, stop taking the drugs I have been prescribed to help my condition and hope this improves my health. A strange one as the drugs were meant to help me, not make worse. But alas, for a complete picture of what is wrong I need a drug free system, so coming off them will mean we can definitively rule out the drugs as the cause.
I can’t say the doctor filled me optimism that this will help as he continually referred to the next step, a referral to a specialist in empty bone marrow at King’s College Hospital, as when not if.
There have been some positives though; I now have doctors that talk to each other, my medical records are in reasonable order now, like having just the one set at each of the hospitals and the geneticists have had a rocket put up their backsides, albeit it doesn’t seem to have made much impact.
So it is time to wait again, another two months, before a blood test and in all likelihood a referral to new doctor.