Hi @Xigman of course you are not a fraud, you honestly say what is going on for you.
Welcome to our forum.
What you do say is that you have many long term conditions and, as a completely lay person, that shows what complex individuals we all are with our own unique medical histories.
Perhaps this means that it makes it more difficult sometimes to make definitive diagnosis and all tests are to rule conditions in or out.
I attach a page from the Blood Cancer UK website for you. Tests for myelodysplastic syndromes (MDS) | Blood Cancer UK
However whoever is looking after diagnosing you is the one to talk to.
I always write down all my fears, questions and practicalities to ask at my appointments.
Is there anything else behind your question?
The Blood Cancer UK support line is there for you on 0808 2080 888
Please do let us know how you get on and really look after and be very kind to yourself
Thanks for the quick reply and the link for more information.
I think the quest for a fast diagnosis of Myelodysplastic syndrome (MDS) one way or another is because I have had to wait years for some diagnoses often after serious incidents and emergency hospitalisations.
My GP has always taken a wait and see approach and has actually missed some serious conditions which have shown up after insisting on hospital consultations.
The teaching hospital haematology department said to wait until I had a platelet reading of 80 before they would do a biopsy but my GP isn’t going to schedule even 6 monthly blood tests saying an annual one will be fine.
I’m 71 and actually on borrowed time had I taken advice on my life expectancy! I’m not concerned about an Myelodysplastic syndrome (MDS) diagnosis but it would certainly explain my defunct immune system.
I just wondered if there was a quicker test for diagnosis of Myelodysplastic syndrome (MDS)
@Xigman Just wanted to say hello & welcome! I can’t answer your question directly but you’ve certainly come to a very supportive place here. Lots of great advice & support. I’m supporting my husband whose was diagnosed with Chronic myelomonocytic leukaemia (CMML) 6 months ago. Keep in touch & very best wishes to you
Welcome to our forum. Like @Erica said you are definitely not a fraud posting here. It is a safe and welcoming place.
In regards to your question, you do need a Bone Marrow Test to diagnosis Myelodysplastic syndrome (MDS). There are no quicker tests available. This would be need to be arranged by your haematology department.
Do you mind me asking if your other blood counts are normal? Myelodysplastic syndrome (MDS) can also affect your red cells and your white cells as well as your platelets. Having a low number of healthy white blood cells in your blood can make you more likely to get infections. It can also make it harder for your body to fight infections.
It might be worth speaking to your haematology team to confirm how often you should be having your bloods monitored or perhaps seeing a different GP if you are not happy with your current one.
I was told I also had a low red blood cell count (as well as platelets at 90) but my ferretin levels were normal.
It’s a small GP practice and my GP is head of practice. Hard to change as I would probably see him on other appointments.
I’ve had 15+ years of being told things like my pancreatitis was anxiety about work until I had an acute attack and was hospitalised for 2 weeks and my ischaemic bowel disease which later caused acute bleeding and hospitalisation was IBS!!
I now push for hospital consultations if I feel something is wrong, hence me asking for a haematology appointment when I noticed my platelet count was dropping. I’ll ask for another blood test in 6 months.