Good morning everyone
I was recently diagnosed with PV JAK 2 Negative and have been suffering pretty bad wth the below Symptoms and so far have ony had one venusection.
inging in ears/sensitive hearing,
twitching in arms and legs,f
eels like electricity is running through my body,
black lines/flies in eyesight,d
aily sickness which has stopped since my first Venesection,itching in arms and legs and areal issue concentrating which is effecting work.
I've been pestering my doctor and also my Haematologist but have not got anywhere and even spoke to a hospital in Oxford that have MPN specialists but was told I could not get referred to them unless my current Haematologist recommended this of which he doesn't.
I have been trying everything I can to get on top of at least some of my symptoms and last week paid a visit to a Macmillan Wellbeing Centre based at Southmead Hospital in Bristol and I finally think I am getting somewhere.
I was with them for around 2 hours and explained everything to them and they have refered me to a Fatigue specialist close to me,put me forward for reflexology and also explained that they were going to email the senior Haematologist at Southmead(who I've been told I should have seen first time round) who is going to review my case.
Yesterday I had a call to say I have an appointment next Tuesday and I am over the moon.
I keep reading post on here where people are able to live a pretty normal life which is what I need as I am finding I am sleeping way too much when I am of sick from work or at weekends so I am really hoping something else can be done for me when I go back to the hospital next week.
So a very quick question....Could you please let me know what I should be asking or taking a note off??I understand haemoglobin levels are important but is there anything else I need to ask about??
Sorry my first and only visit to the hospital was not very good and I was not given much information at all.