Thank you

Though it's been a few weeks since I posted on here I've been reading all your posts and found discussions about and answers to many of my own concerns, so thank you everyone.

After feeling quite unwell for several months I went to the GP and the rest is history as they say.

Had my first check up after being diagnosed with ET two months ago and the Hydroxycarbamide is working! Platelets are on the way down so it's keep taking the treatment and back in 8 weeks for clinic.

I was so worried about the meds that I almost didn't take it but after some wise advice on here I am glad I did.

Hoping to meet some of you in Manchester on 30th.

Very best wishes to everyone x

13 Replies

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  • Glad to hear that things improving for you and are on the way up, or should I be saying down! Seriously so glad to hear things better for you and platelets on way down. Keep smiling and take care Liz x

  • Hey YogaLover, I am so pleased that you got the reassurance you needed to go ahead with the Hydrox and it's helping your counts. It's one of those drugs you have to learn to embrace, a necessary 'evil' I thought of it as. My life seemed so much less complicated when I was popping my 2 a day over many years as I'm sure yours will be so don't go worrying too much. I'm also sure your yoga will help you with the fatigue levels.

    I think our friends here on the forum who contribute freely, openly and honestly will appreciate your message of Thanks and I second it wholeheartedly because if they help one person such as you through a hard time or make a difficult choice a tad easier then it is achieving its aim. .

    Regards JR

  • I know exactly how you feel Yoga. I am honestly blown away by the support I have found since being diagnosed with MF in April this year. Although we are a small community that have been brought together by some miserable circumstances it turns out we're quite a happy supportive bunch as well 😊

  • Hi Yogalover I know how you feel being newly diagnosed myself I have found such support and advice on here its wonderful.

    Caz xx

  • I agree with the others (especially JediReject) about what a help this forum is. I was absolutely terrified about HU and ET before I found it. It is very reassuring that their are others with the same problems and that they are living "normal" lives. I've got my check up with the haematologist tomorrow, the waiting room will be crowded but I won't know if there are any other ET sufferers there (unless they are wearing a t-shirt that says so!). I sometimes feel like standing up and saying have you all looked on the Health Unlocked forum. But being British of course I can't do that!!

    Best Wishes to all. XX

  • Thank You Lizzziep - always put too many zzs in your name and have to delete a couple. I feel just like you at clinic as I know there are at least a couple of other peops on Ruxo poss with MF but not the foggiest who they are and what we might learn from each other. . So I'm well tuned in to how you feel on that score.. So frustrating. Hope all goes well for you 2moro. . Regards JR

  • Dear Yoga Lover

    How sweet of you to reply in the way you have. I myself found this site two years ago and like you found the support and advice invaluable.

    With all good wishes,

    Linds

  • Well put, JR! We all go through some good days and some 'more challenging' ones with our group of diseases and to know we can come here are ask questions, rant about our frustrations or merely wish everyone else good luck and good health is a real godsend as we know people on here 'get' us! Some very useful advice is often imparted on here so I for one value this enormously. So thanks everybody who contributes as they might be asking the exact same question I need answering myself.

    Keep well, everyone.

  • Beetle my friend, thank you v much for your endorsement of my comment. We could form a mutual appreciation society as I agree with all you say especially the bit about peops 'get us' . . Kinda sums it up for me. Keep well JR

  • Hi yogalover are you a fan of yoga by the way ! if so does it help you , yes im grateful also for this site , because like most of us on here there are so many people out there that have never heard of mPDs or ET even with some nurses i spoken too , say ooh whats that!! can i ask what kind of syptoms you were getting befor starting treatment , because i cant exactly pin point how i feel ,the hospital ask me and i say fatigue mostly bit headachy but these can be other things also like just life and stress . my platelets are 526 there holding off on treatment because i seem okay! Have to take Asprin of course ! but being monitored and have been since last November .So pleased you are getting on okay with your treatment , guess thats half the battle eh wish you well and agree with alll the other replys on here to you regards Holly x

  • Hi Holly

    Yoga is amazing - been doing it for 20+ years and the best way for me to exercise physically, be mindful and relax and restore.

    If you decide to give it a try then I will be interested to hear what you think.

    As for symptoms lots of what GP called non specific - headache, very dizzy (bedroom spinning in the morning!), fatigue, burst capilliaries in fingers, night sweats, general malaise. As you say can be symptomatic of other things. When my family started telling me I was looking unwell it pushed me to the docs.

    My platelets were in excess of 1000 and now down to 500+ and symptoms have lessened.

    I have used my yoga to help me get through the stress and fatigue.

    Thank you for your good wishes. I wish you the very best.

    Ruth x

  • Hi Ruth , yes i did yoga around 15 year ago , then i had alot back and Neck problems i have scollosis and could only do certain movements after that, however im interested in doing more mindfullness to help me relax, i dont relax easily . but i can do some of the excerises in yoga , so may look for a group in my area , and just take things slow, gosh i would think you were feeling unwell with plstelets that high, but yes what you describe of your symptoms ,i can relate , the malise, and night sweats , i have started doing colour therapy at home to relax ,its the latest craze for adults haha got my coloring in book whooo . you take care and keep up good work on looking after yourself x

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