Connect
← Return to Newly diagnosed PBC-
Discussion
Comment receiving replies
Sorry, I replied after Cindy and it was meant for sb4. It is equally applicable to Cindy's reply though.
@Cindy - I have been thrown away, brushed under the rug, looked at like I have 3 heads and told there is noting wrong with me'. I stopped walking 2 years ago and it was caused by an "autoimmune disorder" but they didn't know which one. I was never tested for PBC (meaning M2, GGT or those things, liver always tested and always out of whack). My Rheum did NOTHING. Have appt, chat, have blood taken, schedule appt.; show up next scheduled appt., chat with no mention of BW, have blood taken, schedule appt. X TWO YEARS. I let it go too long. I went to Mayo for a review, but the prob is they only did neurology - well I KNOW I have polyneuropathy and myopathy. They did not bring in Rheum., GI or hepatology to consult and I was very upset! My Rheum recently referred me to GI but as stated above, they have not responded. Sooo, I set up Mayo myself with Hepatology in Jacksonville. I really think it is the ascites that has put on 40-50 lbs (which I've been complaining of for one year) and the reason I cannot breathe, meaning deep breath in because you feel very full. That's why I'm pretty nervous about what I am going to hear. I am afraid I missed the boat on drugs that would delay progression.
Replies to "Sorry, I replied after Cindy and it was meant for sb4. It is equally applicable to..."
Connect
Even at Mayo, didn't they do general labs with liver enzymes? When I went, the IMS sent me to multiple specialist's as tests showed one thing or another and not associated with my primary reason for going. Maybe Mayo works differently now but it seems unlikely they would ignore basic lab tests. Were you at Mayo when you had this shortness of breath? Rheumatology wouldn't treat liver disease. At minimum you should have been referred to a primary doctor and maxium a hepatologist. I hope you're wrong that you have such advanced liver disease. In your shoes I would find a good primary care physician to direct your care. That is what they are good for. You should be able to get in with a primary within a couple weeks.