Hello i’m currently waiting for confirmation of Myelodysplastic syndrome (MDS). I have just read a post that sounded similar to my situation. I have yearly blood tests for LFT and cholesterol and normally ask for a copy. In 2021 several of my full blood count markers showed either an elevation or a reduction but it appeared nothing was needed according to the comments. 2022 I forgot to ask for a copy but the things they were checking seemed ok. 2023 my results were much lower or higher than 2021with the usual !! but I was not contacted but as I have been very tired and and dizzy I went to GP who basically couldnt understand why no one had looked at my results. I’m anemic but not because of the usual suspects as they are all normal. The surgery said various things about not knowing what was wrong and did the normal cancer tests but nothing. The was a suggestion of hypothyroidism and i was told that the hematologly would not be interested in me. That started in April. Since then the GP gave in and referred me I have seen a haematologist who referred me for BMB I am now waiting for the results having been told it would be ten days. Have since found out that a letter was sent to my GP (but not to me) that my results will take a month and that I know that I am being referred for Myelodysplastic syndrome (MDS) which is not true. But seeing as another GP has told me last week that i do not have hypothyroidism but suppressed or depressed blood cells it obviously must be. Month ends on 30th just waiting for them to tell me when that appointment will be.
I think I gave an update somewhere else. Sorry.
Hi @Derma a great big welcome to our forum and I have seen your other post.
I have found that there is a lot of waiting and not knowing in the medical system.
I am glad that you had the courage to ring the secretary and that you now have an appointment for 29th Nov.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Please do keep posting what it is like to be you in limbo.
Be kind to yourself and do nice things to divert yourself whilst you are waiting
Hi @Derma and welcome to the forum.
I hope you have found value in the forum by reading about others with similar experiences who you can share with!
As @Erica said, well done for chasing and getting the appointment.
There is so much waiting isn’t there. Please keep posting and use the support line if you need to. And also, keep us updated. Sending lots of love x
Thank you Erica. I have had such a struggle to get to where i am now. All i have wanted was to know what is wrong with me what ever that may be. It wasn t helpful to be told by my GP that he wouldn t throw me on the scrap heap. I know the NHS is struggling, my daughter is an advanced nurse practioner but …Anyway onwards and upwards ll find out on the 29th. Xx
Thank you Nicola75. Xx