New and not diagnosed yet


I am not sure why l am on here, l guess because l am very anxious for my health at the moment, so just wanting to clear things up on factual information about PSC.

I am actually scared to ask these questions as l am very afraid of the answers l get, but here goes.

My story is pretty basic, l just went to the doctor for a liver and kidney check and it showed l had very mild Bilirubin levels, and thats it. All other kidney function is normal. Slightly higher than normal cholestrol and l have had a positive P-ANCA and neg MPO for 3 years, they don't know why that is.

She said, there is nothing to worry about, and l could have Gilberts syndrome. But l am worried, really worried, not so much about just the Bilirubin levels, but its the P-anca that has puzzled me for years.

When l checked my blood results since Aug 2012, my bilirubin levels have constantly gone over up over those years. I am so scared that l am going to die in 10 years. Sorry l don't mean to bring people down. But as you can tell l am very anxious over this, and am thinking of taking a valium.

Sorry to be like this, you all seem so positive and lovely and cheerful.


Thank you Stephen. :slight_smile: You always know what to say.


How is your health other than these wonky lab tests? The ten year thing is very outdated and should be ignored :)

It doesn't sound like you have many other symptoms of PSC, I hope it is just Gilberts Syndrome. What is more concerning is your level of anxiety over this. Have you discussed these fears and anxiety with your physician? They may be very helpful in alleviating your stress. Whatever you do, stop reading scary facts on the internet :)

(Much easier said than done, I know).

I am general okay health wise, but l do at times get feelings of of floatiness or feelings like l am not quiet connected to the world, and l get ear pressure problems. Don't think that is connected. But just last month l had 2 spots on my legs that itched like crazy, like a rash and l scratched so hard. I do get itchy at times, but l put i down to Mosquito bites as l live in tropical climate. But l have never itched all night or anything, just more like a rash here and there at times.

My lab results are P-anca positive, neg MPO, low hemoglobin levels which l have had all my life, as l have a hemoglobin variant called Tulon. Not sure if this is the reason why my hem is low. I have a slightly low c3 count, and now just found out l have a slightly raised Bilirubin levels. My ACE levels were elevated and now gone down, thats what started all these other blood tests. I thought l might have had Sarcodosis, well l still might have who knows. I have been to so many specialists because of my feelings of dizziness and fogginess, at times no one can explain what it is. I was told by the neurologist l have Vestibular Migraine as l suffered from your typical migraine in my early 20"s and now its come back with a different form. I do believe this to be the case at times, but sometimes l wonder if it is that or not.

Anyway, sorry to bore you with all my details.


It sounds like you have an interesting medical history. How stressful to feel as though you don't have answers for many of these questions. It's amazing to realize how little medical science knows about some problems and how many mysteries still exist in today's advanced world. Physicians are pretty good at picking up or ruling out truly scary diagnosis that would seriously hurt you or kill you but they may not always have the answers for other things. It does sound like you have some good physicians on the case to help reassure you it is nothing too serious. Please keep us updated on your condition! I will keep my fingers crossed that a PSC diagnosis is not in your future :)

Hi Leggy,

Thanks for you reassuring words, and l believe that to be true to. I don't think l have PSC, but you never know what the future holds. So for now l am not going to worry about it as l can't control the future and try to enjoy each day as it comes. What ever lies ahead l will deal with it then. I am just so tired of worrying about what all my abnormal blood tests means, that its starting to effect my life. P-Anca is the main blood test result that l am worrying about as it is positive in up to 80% of PSC patients, as l have looked into everything else that it could be and just can't seem to find an answer. It can be positive also in a small percentage of healthy individuals. I keep thinking it could also be some form of vasculitis, but there is nothing to point towards it, except my neuropathy. Maybe l will never find out what it is, as l know these diseases and autoimmune conditions can take years to resurface, or it could be my general make up. Who knows l am not going to worry anymore. But its when l am not feeling well, and l have to go to emergency hospital because l feel so unwell, that l just need answers. Thanks for reading.

My main symptoms that bothers me is floatiness, brain fog, confusion and dizziness. I have ears ringing and blocked sinuses. Feels like l am disconnected from the world. It comes and goes a few times per year. When l have it, it is usually around for 3-6 weeks. Between l feel close to normal, but do have the odd day here and there. I guess l panicked because my P-canc is above normal, and also because l had a slightly elevated Biliruben, which has gone up and down my entire life. So maybe the p-anca isn't connected to anything.

Have you tested your ammonia levels?