Hi all,
I've got gastroscopy today says that I have portal hypertension gastropathy, also I started have huge pain in my joints and muscles... My blood was normal apart ftom very low platelets.Of course my nurse saying that all is complications of cirrhosis and needs to be like that😒 Actually I'm done with this explanations...
Anyone have idea how they doctors check if my liver progess to worst or better?
Did you ever get 100% confirmation of the cause of your cirrhosis or any treatment put in place for the underlying cause? I believe at one point there was some indication of possible auto immune hepatitis or other AI illness - joint and muscle pain can sometimes go along with AIH or indeed other auto immune things.
Monitoring cirrhosis is usually done with 6 monthly bloods, 6 monthly ultrasounds and regular endoscopy screening. Are you actually under a hepatologist?
You say your bloods are all normal which is a good thing as regards the liver but obviously someone needs to sit down with you and explain the full ins and outs of your condition.
Katie
Biopsy says definitely its no AIH, but some some specific blood tests were positive for that. They stick with nafld/ald.I have liver nurse appointments every 3mths and 6months ultrasounds.
Joint and muscle pains arn't typical liver symptoms so I wonder if you've possibly got something else going on as well.
As regards your liver you are receiving more monitoring than most at 3 monthly.
Katie
My nurse says it comes with my liver, but pain is that big that I can't handle a Pan to transfer food but she do nothing about it
I wonder if your GP can get some investigations into the joint/muscle issue - it is certainly NOT a symptom that my hubby has ever experienced in 10 years of his cirrhosis diagnosis.
Ironically enough I had aweful pain in my joints for months. I couldn’t even walk up or down stairs without pulling myself up with my arms on the guard rail. Lasted around 6 months. Every time I walked my feet felt like there were rocks under them. This all started after I quit drinking and started eating better. My doctors didn’t know the cause but it eventually went away.
Yes I was the same. I had physio input as well as my GP. They weren’t sure what was going on. I ached a lot rather than it being pain in my joints. I’d lost muscle mass so they thought it could be connected. I ate well and continued to exercise and it went away.
Hi, pain in the joints and muscles is a very common symptom in cirrhosis and other diffuse liver diseases. This is described in many medical articles. In particular, the occurrence of muscle pain is associated with the destruction of muscles and their atrophy in cirrhosis.
Hi don’t get cross please it will just increase the stress on your body. Was the nurse the from the liver team? Do you know the cause of your liver disease? My portal hypertension has been treated with medication and my portal vein has remained patent and my varicose have resolved. Please listen to your medical team and follow their advice, remember the liver has an incredible ability to heal, but there’s no quick fit, you need to give your liver time and lots of tender loving care ( eat a healthy well balanced diet, reduce your salt, no processed food and plenty of fluids and even more rest) I’m 8 years post the worst prognosis of end stage decompensated liver disease. It can be done but it’s a slow and steady journey. Good luck
My varices went away as well. My mri notes changed from has portal hypertension to some evidence of portal hypertension. I take small wins when I can. Lol
You can get joint pain with liver disease. But in my case that was an early stage symptom so isn't necessarilly any indicator of progression. Muscle cramps can also occur too, for me that was a late stage symptom but again it doesn't have to be. Unfortunately rheumatic type symptoms like these are pretty non specific so its difficult to tell if its liver related or not, but its known to be so your liver nurse may well be correct.
It is worth getting a second opinion from your gp though just to make sure there isn't another cause. Make sure you monitor it and if you get any swelling or redness try and get a picture so they can see. Its worth speaking to your gp about it anyway to see if they can prescribe or suggest appropriate pain relief for it as the usual over the counter NSAID treatment like ibuprofen is not suitable for people with liver disease. Do though be aware rheumatic symptoms can be difficult to diagnose.
I’m not a dr but your age suggests this is something more than alcohol that is causing the damage. Best of luck! How has your blood work been? You should be getting a scan or at least an ultrasound every 6 months to see progression
My blood backed to normal. And yes something more as they consider autoimmune disease! Don't make me an alcoholic or someone who taking drugs!
Right I wasn’t accusing you of drugs or being an alcoholic I’m thinking it’s more autoimmune related.
Sorry I overreacted
biopsy refused autoimmune but liver panel test says its positive
Hope you find some answers soon. Mine is auto immune based and now to have raised pressure in the portal vein, but haven't been recommended any medication. I also have fibromyalgia which can also cause some of the symptoms you unfortunately have been suffering from. (I'm not suggesting you have got it but you can have several auto immune conditions). Hope you feel better soon.
Worried
Worried and concerned 
worried
Worried 
Seeking support, worried and depressed 
