Hi ! I have psoriatic arthritis but I have now been diagnosed with Myelodysplastic syndrome (MDS) as well affecting my white blood cells mainly. I had hardly any info at my appointment and I feel very tired and sore. But anyway wanted to say hello
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Hi @Evelyn61
It’s good to say hello, welcome to the forum.
I know nothing about Myelodysplastic syndrome (MDS) as I have a different diagnosis. So sorry I can’t give any wise words of advice but we are a friendly lot so am sure someone will be able to share info with you
Any new diagnosis is a lot to take in and can be quite scary
Please take care of yourself and let us know how you get on
Best wishes
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Hello there @Evelyn61, a great big welcome to the forum. I’m really sorry to read of that arthritis alone, let alone Myelodysplastic syndrome (MDS). What a lot you’re contending with. I’m so glad you found the forum as it’s been a massive source of information for me, and hopefully will for you too.
Like @DottieB (hello Dottie!) I live with a different diagnosis to you, but perhaps the Blood Cancer UK information about Myelodysplastic syndrome (MDS) would be helpful right now: Myelodysplastic syndromes (MDS) | Blood Cancer UK
Sadly you’re not alone with that tiredness, but I still empathise—it’s literally exhausting sometimes, I hate it! Apparently fatigue is really common for those of us living with blood cancers, so this information might be of interest: Fatigue | Blood Cancer UK
And I just wanted to shared the specialist nurse number in case you ever have any medical questions you wanted to talk through with an expert, or anything else regarding living with Myelodysplastic syndrome (MDS). Their number is 0808 2080 888 and they’re often around the forum too.
Hopefully that’s enough to be getting on with for now @Evelyn61. Maybe have a look around the forum using the search box at the top as you’ll find others with Myelodysplastic syndrome (MDS) have commented before.
Do please let us know how you get on! Glad you found us.
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Thank you so much Duncan and Dottie. Yes the chronic arthritis has been difficult and it’s been unmedicated whilst awaiting my referral ( 10 months!) so hopefully some of the information you have supplied will help. Thanks so much take care x
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You’re welcome @Evelyn61. Oh goodness 10 months is a long difficult wait, well done tolerating that.
Do please consider giving the nurses a call as they can advise on ways you can help to minimise arthritis issues, and are just lovely people who understand what we’re living with.
I’ll keep my fingers crossed that your referral happens sooner rather than later!
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Hi @Duncan
Hope you are doing okay?
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Thank you Duncan ! Yes it’s been difficult. My rheumatologist referred me as he suspected Myelodysplastic syndrome (MDS) but haematology flagged me as routine as a rather unpleasant lady in the dept told me and then tried to cancel my appointment as my bloods improved. I had to contact them and point out that steroids had a tendency to do this….mysteriously my appointment was reinstated and here we are. So I am a bit cross but no point maintaining that. Thanks for your support and help x
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How interesting @Evelyn61 that it was your rheumatologist who suspected the Myelodysplastic syndrome (MDS)! It’s amazing how we can chance upon these caring doctors working in other fields. I’m glad yours helped. Shame about that unpleasant haematology person though—sadly we do occasionally encounter those sorts of specialists.
My first haematologist was, frankly, pretty out of date with his training and made some weirdly blunt assumptions of me that took my second, great haematologist to help undo. Now the Polycythaemia vera (PV) I live with is well-managed 2 years later, so I’d say it can be worth asking for a second opinion.
Sadly you’re not alone in receiving questionable care according to what others around the forum have also said, but please never tolerate poor care again. There are NHS services called PALS to offset that should you ever need to.
Well done getting your appointment back thanks to your medical understanding! Let’s hope you won’t need to reassert yourself so often!
Do please keep us posted about how you get on, I’m so glad you found the forum!
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Aww @DottieB, I’m doing really well, thanks for asking. I hope you are too. Enjoying having more energy than usual whilst trying not to overdo things.
Dare I say it but I think we’re off to adopt a little miniature pinscher dog today and I’m so excited!!! 
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Oh @Duncan we expect doggie updates, look after yourselves.
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Hahaha it’ll be my pleasure dear @Erica! I feel like I’ve healthily grieved my companion’s losses from last year now, and am ready again for canine hilarity and walkies—I’m so excited to take them up into the redwoods!
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Thanks Duncan, it was actually an admin on the desk who was so helpful! But I will keep fighting if I have to. I have a nurse ringing Tuesday. Thanks for your help and glad you are doing well. Your new furry friend will help! X
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That’s the spirit @Evelyn61! We do tend to have to be our own best advocates, as @Erica taught me, and clearly you’re skilled already.
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