Bossywife - Thanks for your kind words. My WBC is stable at 3.65 and my Neutrophils stay around 1 and drop occasionally below it. The Revlimid keeps my Hb stable with only my RBC dropping slightly under normal levels and the platelets are at 100 which is a side affect from taking the drug. When I was first diagnosed both my Hb and white cell counts were affected. It's good your husband stays active, it really helps with managing fatigue. It sounds like an oxymoron to do exercise when your tired, but honestly it works. It picks up your spirits and makes you feel energised. It's a great way to keep positive when your living with the MDS symptoms or any illness.
Mags - Thanks for your advice and support. I'll definitely ask the specialist about the IGG3 deficiency test.The hospital gave me pantoprazole for the oesophageal spasms but were not willing to give a reason for the acute episode. I have experienced constant sudden onset diarrhoea ( three - four times a week) for five years now and was referred to a specialist last year, but somehow it was lost in the hospital system. On my last specialist visit they made another referral, unfortunately it seems to have been misplaced again. I'll have to make some calls this week to chase it up. Hopefully a gastroenterologist may have answers for both issues.
I experience peripheral neuropathy in my feet, but the symptoms are minor and still bearable. The Haematologist believes that my Hb will drop if I stop taking Lenalidomide and my blast count would return. With no real other options other than a BMT I will need to live with the neuropathy for now. My bone marrow test results are not improving, with the MDS del 5q aberration percentage increasing incrementally with each biopsy.
As for the foot, this morning I pulled out another splinter, this time it was 1.5cm long. After four weeks I don't no how it was missed! My husband put a drawing agent on it last night and this morning I could remove it. I might just have a chance to get rid of the infection.
Thanks again for your kind words Bossywife and Mags.
Cheers Rachael