Hi all only me again.

[Mummymoors85]

I had my appt with gastro yesterday and he still isn't happy to confirm I have PSC.

He said he has whittled it down to 4.

Raynard's Disease - need to speak to rheumatology next week with this one.

Lupus - he said this is an odd one as he did a test for this it came back negative and rheumatology did one and this came back positive ??? And I'm not having the common signs for lupus what ever they are.

Autoimmune hepatitis- but bloods came back normal

PSC - rheumatology said it was but very early stages and gastro have said because it's not jumping in the face PSC he doesn't want to say it is.

So next stage is biopsy but this can only be done when my ALTs are sky high again and when this is the case I'm hospitalised anyway but will have to have an emergency biopsy. My worry is when I'm sick I'm really sick and I'm not really sure if I could cope with an op at the same time. Is it local or do the put you out. He did say we will keep you in till your better which is usual 2/3 weeks so I know I can rest.

How did people after theirs? Do I need to forward plan anything? I can't do much because pin pointing when that bus is going to hit me again is like finding a needle in a haystack.

[AyrshireK]

Liver biopsy is really only the way to see what is going on at a cellular level within the liver. It is a simple and normally quick procedure.

The simple way is where they enter through your side, it is normally just done with a small local anaesthetic and they guide needle by ultrasound into the liver where they take a few small samples. It takes just a few minutes and afterwards you have to lie down for a while with regular monitoring to make sure you haven't had a bleed or anything. Some people do feel a little bit of discomfort but most people say the lying down afterwards is the hardest part.

My hubby has had one by that route when he was first admitted to hospital really poorly and then a second a couple of years later via the transjugular method which is the preferred and safer test for those who have very low platelets, poor blood clotting .......... he also had to have a platelet transfusion before it.

You just have to take it easy for a few days afterwards - no heavy lifting and that sort of thing but really you normally would be up and about the same day. If it's done as an emergency then chances are you'd get the results back quicker than a routine test ...... we waited 8+ weeks for hubbies first biopsy result which actually came back as inconclusive as they hadn't taken a big enough sample. Even his second one didn't reveal too much ........ just confirmed his cirrhosis and no ongoing inflammation.

Hope you get some answers really soon.

Katie x

[Mummymoors85 in reply to AyrshireK]

Thank you Katie.

I'm not sure what's worse hoping I don't get sick as no one wants that.

But on the hand knowing it's going to happen again and just have to wait.

I'm hoping to go to work in September but not sure if I should explain at interview or wait till I get a job and then explain.

[Identity75]

Not sure what part Rheumatology would play in diagnosing PSC. I've had this since 2003 and have not once seen anyone from Rheumatology. Do you have either ulcerative colitis or Crohn's disease? PSC normally accompanies one of these but I think rarely appear on its own, I could be wrong on that point however.

With regards to the biopsy as Katie said it's fairly painless, for me it was just an uncomfortable feeling and yes the worst part is the long wait afterwards, take a book to read if you're on your own.

[Mummymoors85 in reply to Identity75]

I'm with rheumatology because in my hospital they deal with autoimmune diseases.

You can still have PSC without colitis and crohns. But your right it's more common to have them. But my uncle has crohns and my Nan has colitis so they are keeping a close eye.

When have the biopsy they won't being doing until I'm hospitalised usual because my alt goes sky high and when that happens I can't see straight let alone concentrate on anything so I would likely to sleep most of it because that's all I do when I'm that ill.

But funny enough it was rheumatology that said PSC not gastro. My appt yesterday with gastro was interesting when I said rheumatology said PSC he was like yes that was on my radar. 🙄

[debra7]

Hi Honey, I've had a liver biopsy. Mine was done under a local anaesthetic with the help of a scan at the time of procedure so they could biopsy certain tissue. It only took minutes and was ok. It confirmed my fibrosis and NAFLD.

[Mummymoors85 in reply to debra7]

I think it's just worring me they can only do it when I have my flare ups. I know how rubbish I feel the thought of having that at the same time scares me.

I just have to get over it otherwise I'll never find out what is going on.

It won't be for a while I imagine as my last flare up was in Feb. The one before that was 15 months the one before that was 18 months and the one before that was 20 months.

So mathematically it should be 12/13 months after my last so next Feb/march time.

But we all know it doesn't really work out like that.

[Hidden]

Hi

I've had biopsy and yes the worst part is lying still for a few hours afterwards. Please take care xxxx

[Mummymoors85 in reply to Hidden]

Thank you lynne xxxx

[Hidden]

I had my first biopsy when I was newly diagnosed, so my ALT etc was sky high. (around 900-1000) Apart from a pain in my shoulder afterwards (due to the blood supply that is connected to the liver) I was fine, although the pain was very intense. I also had to have Vit K since my blood was not clotting as well as it should and 8 years later I am still here to tell the tale. so hopefully, even if you are very sick, you should be fine. I wish you all the very best

[Mummymoors85 in reply to Hidden]

Thank you x