Wondering If anyone else is having these symptoms?

Hello,

I have just recently been diagnosed with PBC. Got blood test done because I had repeated swelling and SEVERE itching of the eyes. they did a lupus test which came back negative but found abnormalities so they then tested for PBC. now here I am. I am 22 and have had the eye lid swelling and itching for almost 2 months (they have me on antihistamines to control the swelling), nerve pain down my legs for 2 years now (unexplained), recent joint/bone pain, pain in my abdominal, troubles with my stomach after eating, lung and chest pain (feels like angina), pain with bowel movements, random spotty bruising on the top of my thighs. The abdominal pain is getting so bad that I'm starting to have the same dream every night that I have been shot in the abdomen and I wake up with extremely bad abdominal pain. My GP has ignored most of my symptom's for years and now she is telling me that a lot of my symptoms are unrelated to the PBC yet shes doing nothing to figure it I don't think she even really understands PBC.

5 Replies

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  • I have a lot of these systoms as well, particually to upper stomach pains.I think you must go and see a specialist, to be listened to and have things explained. Most GP's dont have a clue.Muscle and joint pains are common with PBC. I have chest pains too keep thinking I'm having a heart attack, have had an ECG, all that shows is that i havent had one! I am now on Amatryptaline for pain(i have very bad sinus) and it is helping alot. Also on Domperidone for stomach, the food is not going through my digestive system properly and this is to help, but its not doing much so far. The apin killershave halved to stomach pains though. Your eyes could be something else another immune problem,it seems that once you have PBC other immune ailments happen. Good luck and hope a specialist can give you some help.:)

  • Oh dear sounds like you are getting a bit of of everything,i do get the ache's and pains and Itching that is unbearable when it starts,i also get bruising on my legs and arms,i did get this checked out and it is to do with having a low white platelet count ,well mine is i have to have blood test every 3 months to make sure it dosn't get to low,i have been ok up to yet its quite low but not needed any treatment for it,i also have a slightly enlarged liver and spleen again not causing any problems just yet,The list of symptoms are endless are you taking urso yet.

    Take Care

  • My investigations began with swelling of the eyes, although they weren't itchy. Gp did blood tests & found I had high liver readings. After lots of investigation I was diagnosed with pbc 7 months later. By this time, the swelling in my eyes had gone down completely without any meds but the hospital were never sure if it was related. My advice would be to ask to be referred to a specialist. The hospital I'm under in liverpool left no stone unturned when investigating my symptoms - ECG, blood tests, chest x rays, 24 hr blood pressure monitor etc etc. I'm sorry you are having such a tough time, you really do need to see a medical professional who will take this seriously. Good luck.

  • I think many of us have at some time or other had our symptoms ignored. They make you feel like some sort of hypochondriac and that you are making it all up. When you are young they make the excuse.....not at your age, and when middle aged.... well you are *** you can expect it at your age.

    If you have not yet been referred to a specialist I would definately request one and if you have seen a specialist, ask for a second opinion. Its obvious there must be something going on for you at only 22 to have so many symptoms.

    Keep your chin up and Good luck

  • Thank you very much everyone for your responses. I have decided to take a medical withdrawal from school due to the severity of my symptoms my marks have fallen quite a lot and since I am trying to get into med school this seems like the best choice so that it doesn't effect my transcript. I am a person who hates to not finish what I have started but I think this is whats best for me right now until I can get my symptoms under control. then I will return to finish my degree and continue on to med school. It is a tough decision for me and it will be weird not being in school and just taking care of myself for a bit :-) I am very glad I found this forum it has helped me out so much. I was quite devastated when I found out. I think I'm doing much better with dealing with it now.

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