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Hi folks,
Firstly may I introduce myself, I'm brian and I have MDS (sounds like an introduction at an AA meeting)
I was diagnosed a few weeks ago but as all of the results haven't been totally verified I'm not totally sure where I currently stand.

My current understanding is I'm RA and on wait and watch and I think it's classified as mild.

I got my latest results today and my red bloods cells have dropped from december from 9.8 to 9 and my white from 2.4 to 2.2 and my platelets are border line low.

Would this be what I should expect and at what stage do blood transfusions start.

I'm 53 and not wishing to be cruel but my consultant was quite vague.

Thanks

Hi

Diagnoses can be very daunting particularly as you can range with MDS from grades1 - 4 of where you might be. My Consultant Haemotologist gave me an excellent booklet which showed the range of Myeldysplastic syndrome and marked relevant parts to my current condition.. I am currently MDS RCMD which means i have my bloods taken every six months and generally on watch. My Haemoglobin is currently 10. Two weeks ago I was admitted to hospital for emergency op for ruptured spleen which was repaired with the wiring technique and recovering well. I am due for blood tests next week and have an appointment with my Haemotologist on 14th Feb. You must ask questions especially if there is something you don't understand about your condition and insist on an answer.

Hi Brian

Welcome to the Forum. Sorry to hear about your diagnosis. It's always a bit of a shock. Had you been having symptoms or was this found as a result of other tests? Please contact Sophie if you need any help de-coding information you have been given - though it does sound as though you have had much! This is not unusual I am afraid! However, it may be that the full results have not come in yet? Did you have a bone marrow biopsy? These results usually take several weeks and can give a much better classification of your type of MDS. Blood transfusions will be at the discretion of your haematologist and dependent on how you are feeling - fatigue-wise - not necessarily the raw numbers in the blood count.

My understanding is that people with RA (Refractory Anaemia) only have their red blood cells affected and, as your other counts are not in the normal range, it may be that you end up with a different classification of MDS. This is a question you could ask your specialist when you next see him/her.

I want to ask Andy Pandy a question as a result of what was said but will start another topic to avoid hi-jacking your post!!

best wishes

Chris

Thanks guys for your replies and in answer to your questions, yes I've had a biopsy, on the 9th dec and am due to get the results hopefully on the 19th February at my next appointment. I was initially told it was RA but wasn't given an IPSS score.
I must admit I learning all of the terminology slowly but surely and have a much clearer understanding after talking to Sophie so hopefully my next appointment will answer a few questions.
The not knowing is difficult.
Anyway thanks once again for your replies they are appreciated.

Dear Brian

Yes, I think we can all identify with those early feelings of not knowing, the what seems like endless waiting for information and the process of slowly understanding more about the disease, the MDS jargon and its implications. I hope that you feel a little better equipped to ask the right questions at your appointment in February and do keep in touch with Sophie for any follow-up questions you have as a result of that session. Meantime, try not to over-use Dr Google as MDS is so varied that it really is worth waiting until you have all the information from your haematologist. If you can, try to set it out of your mind for a while - however difficult that seems. It does all get easier with time I have to say.

Take care

Chris