Any MPN/MDS Crossover Syndrome Patients?

[Tartanlady]

MDS/MPN overlap syndrome

I was diagnosed in March 2019 and am currently on EPO weekly injections to improve my Haemoglobin. I take Asprin to help with my high platelets. On the whole I am active and manage to do my daily housework and am doing my office work from home. I have recently been having bouts of dizziness and nausea which last for 2-3 days but I didn’t realise this could be my illness. Another problem I am having is sleeping!!!! I was putting this down to having my husband at home furloughed from work as he is a night shift worker and normally I have the bed to myself most of the night but am wondering if it’s the restless leg/fatigue thing. Also the other day in the shower while washing my hair I had an episode of complete energy loss and had to hold onto the door handles until it passed. Any thoughts or advice would be appreciated!

[D1i2a3]

Hi sorry to hear think restless legs can be due to over tiredness I have meylofribrosis I’m on run and hydrocarbon and Asprin fatigue is hard to cope with I’ve had for 4years ET for 10 years before that think you just have to rest when you can drink plenty of water it does really help hope you feel better soon Diana

[Tartanlady in reply to D1i2a3]

Thanks for that Diana.....I was thinking the 'common thread' in most posts was the hydration thing! I'm really not a water drinker but will certainly give it a go. Christine

[D1i2a3 in reply to Tartanlady]

Neither am I I usually put lemon in it do you live in Scotland I’m from Ayrshire?

[Tartanlady in reply to D1i2a3]

Yes, I’m near Huntly in Aberdeenshire

[D1i2a3 in reply to Tartanlady]

My sister live in Findhorn I went to the meeting they had in Glasgow was a long day

[Tartanlady in reply to D1i2a3]

Findhorn is lovely! I've never been to any meetings but did join the MDSuk Webinar a few weeks ago but must admit never joined in but listened 🤔

[D1i2a3 in reply to Tartanlady]

Meeting was a bit too in-depth for me and lasted nearly 4hours then when we could actually talk to one another it was almost five o’clock think every one was shattered if you ever want to call for a chat my number 07525741843

[Tartanlady in reply to D1i2a3]

Thank you so much for that! This 'disorder' makes you feel quite alone x

[hunter5582]

Sorry to hear you are having a rough go of it of late. MPNs are complex enough without adding the MDS overlap. I hope you have found a MPN-Specialist to consult with as this would be beyond the scope of expertise of many hematologists.

It is really hard sometimes to tell what is the MPN/MDS, what is a medication side effect, and what is something unrelated. The constitutional effects of the MPN/MDS syndrome can really be a bear to sort out. Dealing with the impact of JAK2+ PV has been more about managing those issues than thrombosis/hemorrhage problems. I would suspect that a lot of what you describe is in fact directly related to the MPN/MDS. Insomnia is a problem for many of us. Fatigue is also common.

I was chatting with someone else with MPN/MDS overlap and found these resources which may help.

patientpower.info/myeloprol...

silvermpncenter.weill.corne...

ashpublications.org/blood/a...

I hope you find some relief from symptoms soon.

[hunter5582 in reply to hunter5582]

patientpower.info/myeloprol...

silvermpncenter.weill.corne...

ashpublications.org/blood/a...

[hunter5582 in reply to hunter5582]

Arghhh! Trying one more time

patientpower.info/myeloprol...

silvermpncenter.weill.corne...

ashpublications.org/blood/a...

Hope it works this time! If the links do not work, just copy and paste into your browser. All the best to you.

[Tartanlady in reply to hunter5582]

Thanks! I got the links. My consultant is in Aberdeen Dr Dominic Culligan and it would seem that Aberdeen is a 'Centre of 'Excellence '....I do know that there seems to be no 'general written treatment' for these crossovers and they are difficult to characterise and uncertain of any prognosis.

[hunter5582 in reply to Tartanlady]

MPNs are complex enough without adding the MDS overlay. Glad to hear you have a specialist who you feel you can count on.

One thought I had was that you might want to check in with an Integrative/Functional Medicine doc. These docs look at the whole body as a system. They tens to be more open to and knowledgeable about complementary health approaches and tuned into issues like nutrition and exposure to toxins. The Integrative Med Doc I went to see found Vit B/Folate and Magnesium deficiency and elevated mercury levels. Also had Vit D deficiency. The doc is also working with me on the very bothersome systemic inflammation issues that accompany the MPN.

Sometimes we just have to manage the symptoms the best we can. Hopefully there will someday be a cure.