Waited 2 yrs to be seen by liver consultant, now been told 11 month wait for MRI

[Suin]

As above, I’m going to have to pay for MRI rather than wait 11months. Initially I was told I had Autoimmune hepatitis, but after a 2 yr wait it seems possible PSC? This is referral for private MRCP. What’s subtle CBD? Thank you 😊

[chrisw740]

Hi there, normally CBD is referring to the common bile duct... They may be suggesting there's a small stone or constriction or residual blockage- that was too subtle to be seen on ultrasound. Good luck and I hope the frustrating delays are resolved soon. Cx

[Suin in reply to chrisw740]

Thank you for your reply. Do you know if a stone or blockage would cause all the fatigue, nausea & itching too? I’d positive antibodies as well. 😐 I’d prefer a stone rather than another autoimmune disease.

[Hidden in reply to Suin]

Absolutely it can cause those things yes. The inflamattion in PSC that results in the blockage is considered to be autoimmune tho.

[Suin in reply to Hidden]

Thank you, but if a gall stone was blocking a duct you’d have all these symptoms too?

[Allystar in reply to Suin]

Yes i have the very same.i had micro surgery for my gallbladder and stones some went into ducts. My bile duct doesnt work and all the symptoms you described are what i have. X

[Suin in reply to Allystar]

Can they not go back and take the stones out?

[Hidden in reply to Suin]

Technically yes they can. Usually I believe by keyhole laproscopy. However if the cause of the stones isnt treated or cant be treated, the problem will reoccur. The rate of reoccurrence can be different in people and this can result in frequent surgeries which of course come with their own struggles.

[Suin in reply to Hidden]

Ok thanks, yes I suppose if ongoing then you can’t keep having surgery. Do they remove the gallbladder then?

[Hidden in reply to Suin]

Not necessarily. That the doctor would have to asssess.

[Hidden]

PSC stands for Primary sclerosing cholangitis. PSC is progressive inflamattion and scarring of the bile duct. This causes them to narrow and subsequently become blocked. They are basically saying here that the CBD could be unrelated but are wanting to look further to see if it is PSC that is the underlying cause.

Obviously nothing is conclusive thus far but, here is a link to some info on PSC from The British Liver Trust website:

britishlivertrust.org.uk/li...

[Suin in reply to Hidden]

Thank you, for your reply and the link,

the waiting so long has worried me,

in that I may have needed to be getting treated for one of these all this time.

[Hidden]

Good afternoon, if you are living in the UK then 11 months to wait for an MRCP seems a very long time to wait. If tyou are in UK it may be worth phoning your local hospital Patient advice and liaison service (PALS) to express your frustration and ask if it could be looked into.

regards

[Suin in reply to Hidden]

I rang all the hospitals in my trust area who do MRCP the least wait is 6months, the hospital I was referred to was 11 month wait. M in the north of Ireland.

[Hidden in reply to Suin]

There should still be an equivalent of PALS in Northern Ireland. You might want to look at the following website:

nidirect.gov.uk/articles/ma......

regards

[Matthewr73]

Thats truely shocking! PLEASE DONT pay private! Why should you?! Go to PALS, i had to use them last year and got an appt within a week. I had waited over 30 weeks when i was told it would be 7 and after many calls to the hospital and many canceled appts enough was enough.

I really have lost all faith in the NHS.

I wont tell my whole story but i've spent over 2 1/2 years going round in circles with no less than a 6 month wait to see any consultant no matter what the speciality is whilst dealing with a GP who puts a massive brick wall up to everything.

It's also very much a postcode lottery and could you imagine a Royal or MP waiting 11 months for an MRCP? NO chance it wouldn't happen.

I never ever thought the NHS was as bad as it is.

[Suin in reply to Matthewr73]

I rang the patient and client council twice today and got a recorded message 🤷‍♀️

When I got through the lady said they dealt with complaints but it would make no difference to my waiting time.

[Hidden]

Hi Suin,

I'm hoping all the good advice people have given you will help you get an earlier appointment and within your NHS.

Best wishes,

Mary

[Radnor]

I'm not sure if chose and book is available in your area, but have you considered asking to be seen on the mainland? Ferries run daily to Liverpool. I asked my GP to refer me to Royal Liverpool, they have a dedicated Liver Centre/Gastro . I think it would cost less than a private MRI and I have found them fantastic. Its virtually in the city centre too so you wont have to travel miles to get there. Just an idea, I was seen 6 weeks after my GP referral.I awaiting a specialised scan which should be in early May as only a couple of radiologists can do this. Normal MRI scans should be much quicker. Good luck getting sorted, worry is so destructive. Hazelx

[Suin in reply to Radnor]

No, I can only be seen in my own trust area under nhs here. Thank you, yes I’d just like to get started whatever treatment I need. Then I’d be doing all I can. The fatigue is brain numbing.