i don’t normally come here to moan but I feel I need speak to someone since the pandemic it feels like I have completely different team altogether my liver specialist hasn’t seen at all in 2 years and has ignored all communication I have bleeding varices which he used to band every 6 months they put me on fedratinib and it’s been an awful experience they have know from very early on it was working for me yet kept me on knowing it wasn’t working they have always promised me stem cell I had to trust and wait till the time is right and now it’s well you might not be ok to do it now I just feel completely letdown I have been suffering horrendous stomach problems and hip pain for 2 years no one did anything despite the fact I pleaded with them then this week I woke up and I have lost the use of my legs leaving me bedbound has anyone else had this
Losing faith: i don’t normally come here to moan... - MPN Voice
Losing faith
so sorry for you hope you get sorted x
You can hardly be blamed for losing faith. What you describe sounds like outright medical negligence. COVID is no excuse for failing to properly treat emergent medical issues. The sudden loss of ambulation should be treated as a medical emergency. At this point, I am not sure why you are not in a hospital given what you describe.
Suggest that you contact the patient advocacy branch of your local hospital for assistance. You may require legal assistance as well. Assertive patients receive higher quality care. Passive patients do not. It sounds like it is time to be VERY assertive.
I hope you are able to receive proper medical treatment soon.
Must totally agree with hunter, this situation you have been left in is very bad. I haven't heard of PALS but this seems a good route to start with. Wishing you the best.
I agree with Hunter - it would be a good idea to contact PALS. Do you have a specialist nurse you can phone?I'm so sorry you are going through this.
Iv contacted pals 3times due to none appointments even when consultant told me to come back they have helped me everytime good luck
I do but it’s rare I get a reply if I do I will ask her question she will good kept well answering nothing of what I said she’s no use to me
I do hopeyou can get some support and help.
So sorry to hear this. It’s totally unacceptable ‘care’.
I agree with the suggestion about contacting PALS. Hopefully, all your care is under one hospital for easier collaboration between departments.
Great advice Hunter do hope you get some help very soon!
sorry you feel so low. You must get seen by GP who should get you into hospital . If it was me I’d definitely ring straight away and get urgent appointment . If you can’t get appointment then ring an ambulance . Some Nhs departments are failing . You should be a priority . Hope you regain your mobility and feel better soon .
so sorry to hear that, my own experience got varicessince march last year, bended monthly just the past 2 months everything got better(since my portal vein is totally blocked), found jak2 sept last year, got splenomegaly, Primary Myelofibrosis intermidiate 1 and some gene mutations also(not the mpl one) hopefully if everything under control(end of this month they will do endoscopy to make sure im fit) next month i will start my jakafi, i dont want any transplant (cause I believe what’s worn out I don’t want to replace it, some kinda let go and let god), i felt extreme fatigue, pruritus, my back a bit fragile, stomach fullness. Hope my sharing can help, take care!
What is PALS (Patient Advice and Liaison Service)? - NHSnhs.uk › NHS services › Hospitals
I hope checking out this link helps you find the help and patient care you need. This is for UK patients under NHS. I have not used it personally, but have friends who have very successfully. I truly hope you get all the help and assistance you need.
Hello Leigh Cox, I am very sorry you have been treated in this way. I do hope you have support, you might seek some counselling through your GP to help you manage your feeling of loss and dreadfully poor medical support. Keeping yourself emotionally strong and stable is important. Good luck. xx
Hi Leighcox85 sorry to hear that you are having a hard time if you can keep ringing hospital and GP pals anyone who can help it’s not right the why treatment is going hope you get some help soon take care best wishes Poppy
I'm so very sorry you are going threw this. It might be time if you'er able to change your medical team. This is very stressful if you can't be on the same page. Best of luck.
oh dear, the fact that stem cell transplant was once mentioned is scary. Maybe it’s time to change consultants but then there is the old saying better the devil you know.
where do you live?
To lose the use of your legs in such a way is a clinical emergency, personally I would ring for an ambulance and let the casualty department start the ball rolling with further investigation. I hope 'someone, somewhere' picks up your case, good luck. x
all good suggestions and I don’t have anything to add except..
…. I am so very very sorry that you have to go through this and I’m sending you love and support
So sorry you are going through this! I agree with everyone, this is medical negligence!! Ring the alarm bells at this medical establishment and get a lawyer if they refuse to help. Hope you have family or someone to assist you with all this as it is difficult for you at this juncture.
thank you everyone for reply’s I really do appreciate it I was rushed into hospital The closet one they know nothing mpn related but my temps were through the roof I did think I was going dye the fevers and shivers and pain was something else I was rushed into surgery my bones had fluid with fluid and I had massive infection so I have had surgery and iam a lot of Iv antibiotics I guess things were just left to long
they are coming later to discuss the damage to bones and if i will gain mobility again it’s not a normal thing unless you have had surgery which I havent so I have no idea what’s going iam 37 I have had this 13 years maybe it’s time realise that it’s just not meant be
You are in the right place now so focus on getting better. Please don't give up on yourself. You have lived with MF for years and you can continue. Do you see an MPN specialist? Could you be considered for an SCT?
yes iam under guys in London qu Birmingham and heartlands Birmingham I have sepis they came today tell me septic arthritis of the hip bones I do feel a lot better after surgery and iam on I’ve antibiotics I was told I could have sct in future when the time came the time is now but now they see we will have see you might not be well enough hope your doing ok I do follow your posts I pray for you xx
Ruxinitlib
NHS cracks showing..!
joint pain 
high platlets 
