If symptoms get worse with ET, could this mean my platelet count has gone higher? I have a haematology appt in 2 weeks.

[LRH1977]

Should I contact my doctor sooner? Started treatment last year, symptoms disappeared but have now returned with a vengeance. Itching burning skin, tingling in left arm and leg etc. Should I be worried? I only got diagnosed last December, so feel I don't know much about this! These were the symptoms I had before diagnosis.

[rubyrubyruby]

Are you taking any meds ?

I have experienced fatigue getting worse so went to my GP for bloods as not due for haem appt until next year. When results came back my platelets have remained fairly stable and I had been expecting to see a change. I was surprised!

If you are worried go to your GP or see if you can have appt moved forward.

[LRH1977]

All I take is 75mg aspirin, which miraculously seemed to sort my symptoms out and I even stopped having migraines! All up until 3 weeks ago when my symptoms returned. I'd had a suspected TIA the year before, but otherwise am fit and well. I wonder whether it's the time of year-feeling colder etc?!

Thanks for replying

[rubyrubyruby in reply to LRH1977]

I have ET and am only on aspirin too at the moment. My migraines have reduced too but occasionally come back, just not as frequently. My understanding is that aspirin won't necessarily improve symptoms but just disables some platelets to reduce chances of blood clot.

[Mazcd Partner MPNVoice]

Hi LRH1977, it would be best to speak to your GP about this, it's too easy sometimes to blame symptoms on the MPD when they might be something else. Maz.

[Borage]

Hi, sorry you are feeling rough. It is worth checking with your doctor.

I find I have more symptoms in cold weather, I get angina which is thought to be related to the ET as there are no cardiac problems. I try to stay well hydrated, plenty of hot, caffeine-free drinks, and a regular brisk walk to help the circulation.

Cold weather seems to make blood stickier?

Best wishes,

Borage

[LRH1977]

Thankyou, I feel a bit of a novice at this, so all your comments are so helpful.

My Grandpa had a 'blood disorder' but I'm not sure what it was-I only remember that he was on Warfarin and that his doctor recommended he live in a warm country, as he suffered terribly in the winter and was much more susceptible to PEs and DVTs when the cold weather hit. He died about 20 years ago at the age of 84, so he did pretty well all things considered.

Brisk walks are definitely something I do when I can, I always feel so much better after. I'm going to get an appointment sorted for early next week, be interesting to see what the bloods are doing.

[Nirbhebe]

I don't know how it works where you are but in my neck of the woods doctors have a nurse you can contact or email forms to check out whether a symptom warrants a visit. I encourage you to keep your doc informed. This is such a tricky diagnosis the illness is quite individual as are the reactions to treatment. What is usual for me might be worrisome for you....best to you!

[LRH1977 in reply to Nirbhebe]

Thank you for the reminder, I do have a number for the specialist nurse! I'll contact her early next week and determine with her what I should do.

[Aime]

Hi LRH1977, I PV and have just had a really bad time with night sweats and itchy skin but my bloods are normal and have been stable for quite a few months, so it may be nothing to worry about but I urge you to do what the rest and Maz have said, contact a medic - even if it is just to put your mind at rest. Best Wishes Aime