not sure we got all my diagnoses right

[Debbieke]

I have just been diagnosed with autoimmune hepatitis. While I accept that as it is hard to deny something a biopsy shows. My GI doctor insists what sent me to the hospital did not come from the liver. I have since been seen by two rheumatologist. One denied RA and Lupus. One confirmed RA. Of course some of the symptoms are from the liver. I just wanted to know if anyone has experienced my symptoms and what it could be. RA, I understand does come from a few tests, but mostly just poking and feeling around. I started with some pain in my hand, but after a couple of days of painting and late nights. For over a week the pain moved to my left hand, then ankles, knees and shoulder with some swelling in the feet. Over the course of a night about a week later, my hands and feet swelled so largely that I could hardly walk and use my hands. I couldn't straighten my fingers and it was the worse pain I have ever felt. I couldn't get up and down, use steps, pull on clothing. red pin prick dots showed up on the lower legs, looking like socks it was so perfect in both legs. Like knee highs. Of course my ana and all the other stuff for autoimmune elevated. The first RA said it was my liver, the GI said no. While I do get aches and pains in my joints, I do not feel they are limited to small joints. Therefore my confusion as to if this really is RA. I was told by one doctor I was a mystery. Surely someone else has had these symptoms. The strongest pain iv meds did not relieve my pain. Only the prednisone, once gotten into my system, reducing the swelling helped. I am not so afraid of the liver issue, while severe they tell me. I am more afraid that swelling and pain will return. About a week after release while on low dose prednisone. I had a sudden swelling and bruising in my finger that spread upwards into my hand. This only painful to touch, kind of numb feeling with a distinct knot between the joints. They attributed this to the prednisone. I also had bluing on the upper foot and a bruise on my arm with a knot under it. I just want to know if anyone else has had this happen?

[fntn]

I've been diagnosed for three years. The symptoms were there far longer, I chose to ignore then being your typical guy, until I ended up in the hospital.

Be sure your doctor do at least a bone density test since many chronic liver disease can lead to what is referred to as Hepatic Osteodystophy. I have osteoporosis myself with severe lumbar vertebrae degeneration and compression fractures. Not trying to scare you, but your doctor need to make sure they get ahead of your disease.

Hopefully you'll get assigned to a good transplant center and can get dialed in. You should be able to be healthy for a normal lifetime without major issues, with the proper treatment. You will just have to get used to constant medications, such as our chronic AI liver diseases require.

Take care.

[fntn]

I have an autoimmune hepatobiliary disease. But I do also suffer from severe bone and joint pain caused by my AI issues and advanced liver disease. I do not have RA or Lupus but my ANA levels are very elevated. So as your doctor mentioned, you may present as a mystery to them, as I certainly do. You'll probably find your Vit-D levels to be very low. But don't let this distract you, it is merely a symptom - not a cause.

[Debbieke]

Such a frustrating disease, autoimmune. Yes, years ago, my ob-gyn said my Vit-D was low. took some supplements for a while, but did not realize this was a symptom and stopped. No one has mentioned it again. May have not been tested. Still awaiting a referral to the liver transplant center. I am hoping to get a better picture then. Until, then I am just left to wonder where I am at and if the meds are stopping the progression. Of late, I feel hardly any circulation in my lower extremities. How long have you been diagnosed? Are the meds not stopping the progression? My back goes numb as well, don't know if it's a symptom or in my head.