An update to my earlier post re test results appointment. I looked up the waiting times for appointments at my haematology centre which stated 18 weeks! Had a panic attack and decided to ring the secretary as they still had rung me with an appointment and low and behold I have one for the 29th Nov. I had begun to think they had forgotten me and she told me she had!!! So relieved that i rang otherwise I would have been a no show. Happy I’m not in a black hole again.
I’m pleased to hear that you did call. It can never do any harm.
I hope you are feeling a little more settled now?
You don’t have long at all now to wait on your appointment and we hope everything goes okay for you.
Do know we are very much at the end of the phone at any point if you feel you would like to talk things through with us- 0808 2080 888.
Take care, Lauran
Nice to talk to you Lauran and thank you for your advice and information. I will report back with my diagnosis after the 29th. Fingers crossed. Xx
Fingers and toes crossed for you @Derma and yes please do let us know how you get on on the 29th. xx
Hi Lauran I have suffered most of my life with IBS symptons but when I was 40 I was sterilized and it changed to diarrhea. During this recent investigation I was checked for coeliac disese which came back as negative and I was told I have a wheat intolerance. I have avoided starchy carbs for years and have since realised that dairy also affects me but I’m getting an upset stomach no matter what I eat is this normal with Myelodysplastic syndrome (MDS).
Hi @Derma I will copy your question to the Blood Cancer UK nurses @BloodCancerUK_Nurses although because of your complex, unique medical history it might be best asked of whoever treats your IBS/diarrhea problems
Perhaps a nutritionist would help you get the best nutritional diet too.
Take care of yourself and please do let us know how you get on.
Thanks Erica. I do not see anyone about my stomache problem its been ongoing since I was a child but it has gotten worse since being asked to eat bread twice a day and then when I stopped after ceoliac blood test its not got back to normal. I just wondered if this was a sympton of Myelodysplastic syndrome (MDS). XX
Hi @Derma ,
It was really lovely to talk with you too. How are you doing today?
I’m sorry to hear about your stomach upset. It sounds really frustrating.
We understand that whilst living with a chronic blood cancer like Myelodysplastic syndrome (MDS), it can be really challenging to understand the cause & root of other problems. It can feel difficult to know what symptoms are connected.
It therefore might be a good idea to keep talking to your GP about this and also ensure you raise your concerns with your haematology team. It can often be a process of elimination.
A review of medications, intolerances and further examination of stool and bowel may be a good next step.
Best Wishes, Lauran
Hi Lauren I shall mention it to my haematologist when I go for my diagnosis on Wed. I’m feeling a bit better today although I had a meltdown yesterday (the 1st during this ongoing saga) but it was my husband who was on the receiving end. Which was totally horrible of me as he has been an angel through all this but is burying his head in the sand. He is still talking about me going sking in Jan because I haven’t been diagnosed yet - its not going to go away in 6 weeks! However as I said I’m better today. Thanks for your continued support. Xx
Oh @Derma I think most of us have the odd meltdown, I think it is better than internalising it, unfortunately our nearest and dearest are often in the firing line.
My husband buries his head in the sand too, which is one of the reasons that I find our forum so vital as I know that I can really be me on here and say how it really is for me and others will understand.
Keep posting and look after yourself.