Can I share signs & symptoms please?

[Jennyfluff]

I'm wondering about symptoms may I share plus I don't have high platelets, not right now but have in the past. Elevated rbc, Hb, hemocrit right now. No kidney or liver issues although had in the past. The past being a year ago.

These are the symptoms I have developed over the last month. Can anyone shed some light on this please?

Extreme fatigue

Brain fog/confusion/loss of words (nootropics helped)

Headaches

Joint pain

Severe cramping/contortions

Itchy at times

Red as a beetroot after a tub/shower

Deep red shadow rings around moon of nail bed

Sometimes splinter hemorrhage in nails

Spontaneous ruptures in my fingers (itchy, painful then bleed)

Thirsty

Stimulants just don't work (coffee, modanifil)

Muscle aches

Calf muscle aches

Swelling of lower legs if I sit too long

Sweating, going from cool to hot (post menopause, years ago surgical)

Breathlessness/ a bit of a cough now (although considered asthmatic for a number of years now)

Slow to heal

Hiccoughs

Ache in left ribcage (thought I had pleurisy but didn't)

Back ache at flanks

I'm 5'4" regular size I think.

Thank you!!! Appreciate ur input and insights.

[Jennyfluff]

I forgot blurry vision and double vision

[nanmc]

Hi are you aware of the forum in Edinburgh?

mpnvoice.org.uk/get-involve...

[Jennyfluff in reply to nanmc]

Thank you Nanmc!! Will have a look at this!!

[Brid12]

It's a tough one for me - I was diagnosed in Feb and really felt good up to then - I did have loss of appetite and joint pains but I was putting that down to Femara (today's Tamoxifen) and now know lots of MPN suffers don't have any symptoms until they have blood checks for whatever reason.

Since starting on Hydrea and Sol Aspirin my problems are mainly the aching in my fingers --my feet are tingly at times - the Hydrea has definitely caused my BP to drop I can feel light headed . I do benefit from walking and hopefully in the cooler weather getting back to tennis - maybe not as aggressive as before .

Good luck. 🤗

[Jennyfluff in reply to Brid12]

Thank you!!! Yeah I was putting mine down to adrenal insufficiency and it wasn't that at all, well I shouldn't say that, it was part of it, but which came first is unknown. Did the AI act up bc I was unwell with this or was it this solely. Probably a bit of both.

I have aching hands and feet too, one big toe which is weird, some tingling. Some symptoms mimics other things don't they.

How wonderful if you can get back to tennis!!!! I do hope you can! Sounds fun! It's fab you enjoy walking!!! Do you have nice spots to explore and walk through?

I'm going to attempt on Monday to cycle again, I'm a keen cyclist. I love being out and about and not this dragging my bum kind of person.

Thank you so much for responding!! Have a really lovely weekend!

[Brid12 in reply to Jennyfluff]

I thought I'd been through the mill !

Our weekends over was hubbies birthday yesterday friends cooking relaxing day today.

Would love to cycle but we live in a hilly area could get down but not up again!

How long were you in Dubai for Jenny I went to Abu Dhabi in 1985 for a year and stayed for twenty five ! Yes loved it .

We live in Cyprus we have great walks hilly and sea - I now with the Hydrea have to be extra careful Factor 50 big hat etc etc

Good luck with your appt 😀