Discovered I had the condition June 2010.
Had numerous Blood Transfusions felt great afterwards for a few days and then felt terrible again.
Am on Recormin 30 000 ml. (Also known as Epoetin beta)
Started with one injuection weekly.
In the last 2 months I have the injection every second week. Makes no difference
Am on anti depressants - no results
Feeling to terrible.
Desperate.
Life is unbearable. also take Rivitrol (Roche are the manufacturers) as it is highly adictive I try and not take too much - only helps for a short while
I feeling I am going crazy.
Terrible Pain from hip bones all the way down to my feet mainly at night.
No stop to anxiety.
Scared of everything, answering the phone, emailing etc etc
I fear leaving home
I fear seeing people etc. etc.
When I discovered I had MDS - haemoglobin level was 4.6
Plasma has now rocketed to 15 and higher
Recormin: gone up to 12 - made no difference
APPETITE no appetite at all until approx 4pm then I cannot stop eating. Meat, veges, everything I can get hold of.
PUT ON ALMOST 15KG in the last 6 months.
Eyesight getting worse. By night I cannot make out the words they are all blury.
Very very dry skin
Mainly at night I have symptons of neuralgia. Mouth and tongue burns.
Head itches and burns.
Continuously sucking my tongue.
The list is endless.
I am so confused please excuse my spelling.
PLEASE LET ME KNOW IF ANY OF YOU CAN IDENTIFY WITH THE ABOVE.