Check up time again..

[catwoman2015]

Hi friends, well platelets going down slowly 378 so staying on one a day of H U. He said i have low salt , i dont know why but i said could it be too much drinking water! can be , but as for my worsening back pain he doesnt think its the MPN or meds ! seems any symtoms i have is nothing to do with mpn etc not even the awful fatigue ! ! So back to Gp friday re my pains .. hope your all okay all the best Holly

[Helen1952]

That’s great news about the platelets Holly and hope your GP can sort out your pain .

Xx

[catwoman2015 in reply to Helen1952]

Hi Helen , thank you yes , my aches and pains last a lot longer nowadays and pain is worse ,can hardly walk at the minute , may or may not be connected to HU/ MPN but will ask for xray to see if my Arthritis, has got worse ! you take care all the best Holly xx

[Helen1952 in reply to catwoman2015]

Just a thought Holly but are you taking Heart meds’ for the Mitral regurge?

Some can cause painful legs .

I only know from Will tho

Xx

[catwoman2015 in reply to Helen1952]

Hi Helen i take bisprol for fast heart rate which is beta blocker used to take propanonol for years but had to change x

[Superwoman]

Good to hear your platelets have come down, as regards to the low salt levels can I suggest that you eat foods that have natrual potassium in. I.e almonds. Bananas, nectrins, tomatoes any yellow fruit and lots of green veg, just google to find out what has potassium in worked for me, levels back to normal these days.

Jean

[catwoman2015 in reply to Superwoman]

Thank you Jean yes i eat bananas most days will try what. you suggested thanks all the best Holly

[Sand-Dancer]

Great news Holly! However how on earth can he say fatigue has nothing to do with the MPN? He needs to ask anyone of us about that 😊. Good luck with sorting your back pain. Lesley x

[catwoman2015]

Hi Lesley, hope your doing okay ? .I know its strange but he seems to dismiss any symtoms i mention to him , to be conected in any way to MPN / HU yes will see a locum Friday about my back pains flair up more often! unfortuntantly my GP of 32 yr has retired now ,and still waiting for her replacement . take good care Lesley Holly xx

[Annie46]

Good news re the platelets . Have you considered asking for a second opinion re your symptom burden ? I have a really lovely generalist haematologist who was adamant that fatigue, night sweats & bleeding gums was not anything to do with my MPN or meds . My GP was very happy to refer me to an MPN specialist . Hope the back pain eases & you can sleep more readily . Annie X

[catwoman2015 in reply to Annie46]

Hi Annie,i will try that , and ask Gp ,will it mean my local heam needs to discharge me if i seek another opinion ? or woukd a specilaist be a one off . regards Holly

[Annie46 in reply to catwoman2015]

Unbelievably I have just had a phone call & I am seeing my chosen person at Christie’s on Monday . I will be having the conversation about coming under his care & transferring from the local provision 🤞🤞🤞x

[lizzziep]

Good news with the platelet levels, hope you can gt your back pain sorted. I have much more trouble with my arthritis than the ET!

[catwoman2015]

Hi Lizzi, i feel for you , yes i have just finished weeks of physio for my neck and shoulder pain now im in agnony standing and sitting long flaire up this time ! gets ya done eh very draining is pain , you take care hope you get some relief all the best Holly

[mhos61]

Good news on platelets Holly. Hope you can get some relief on your additional pain.

Mary x