Hello Ellen,
I don't know if this is an area you can help me with, but thought I'd give it a go just in case it's of interest in any ongoing trials for pre-myeloma symptoms. (I came across your website purely by chance, as I am attending a Dragons' Health Hustings conference on Edinburgh tonight where Eric Low is presenting, and we were given background information on him.)
My husband has been attending hospital every 6 months for the last 5 years since being diagnosed with a very low neutrophil count. (He also had bone marrow taken.) He's been advised it's something which won't go away, and they're obviously monitoring him for signs of myelodysplasic syndrome. He's been told to watch out for signs of infections (he recently had a wee lung infection, treated with antibiotics), and he also gets ulcers on his tongue most of the time, amongst other things. Most recently he's been seen by the local doctor for continuing diarrhoea which has gone on since November – blood tests have come back "normal" (i.e. discounting the low neutrophils), and he's been referred for an endoscopy, which will be in about 3 months. I'm obviously a believer in self-management of long-term conditions (being a nurse student), but must admit we feel a bit frustrated that we don't know if any information is being sent to the consultant within the 6 month period between hospital visits. I'm not asking for a diagnosis obviously, but just wondered if there were any trials at all going on looking at pre-myleoma signs and symptoms?
(My husband knows I'm writing to you, so there's no problem about confidentiality!)
Kind regards,
Jill
