Cataract, Liver/Pancreas issues, Elevated M2 AMA, NAFLD and now Dupuytren's, I am only 45!

[Cooper6]

Was diagnosed with Liver issues/poss PBC in 2009 after elevated alk phos for 10+ years and Elevated M2 AMA (negative in 2003 but positive in 2009, rechecked multiple times by multiple specialists, all positive), and NAFLD, then in 2012 diagnosed with posterior subcapsular cataract in right eye. Spent months in hospital with severe pancreatitis in 2015 (collapsed lung, fungal blood infection, ascites). 2018 fibrous breast tissue causes cancer scare just after I learn I had a torn rotator cuff in right side, carpal tunnel and cubitol tunnel. Oh and 3 hemangiomas in my C5 (Large), C6, and C7. 2019 and mind you its only January, my cataracts is so bad I must have surgery because I can not see through that eye at all, and now I am in the early stages of Dupuytren's in my right hand. Why does the right side of my body act like it is 20 years older than the rest of me?

[4pjx__]

I was thinking I had more trouble on my right side too. Arthritis in the hip and knee and my eyesight and hearing are not that good also a toenail fungus. Now I am getting arthritis in the left hip also had a benign cyst in my breast a couple of years ago. Maybe you're just not old enough...😉 if you can wait long enough it could come around to the other side.

The Dupuytren's does sound painful. I really hope there is something that can be done for it and you are feeling better soon.

Stay strong and positive (staying positive is my personal work this week)

Pam

[Arlie]

You poor thing at 45 , take it easy, step by step 🙏🙏🙏

[butterflyEi]

Hi, not that I suffer anything like what you are having to cope with but for me most everything is left sided. I am left handed whether that has anything to do with it or not I don't know. I hope you and the medics can get on top of this and come out the other side feeling like you can cope.

[Hidden]

Hi Cooper6,

I feel your pain... i turned 45 this month and feel like im 20 years older,in fact my mum is and she is better than me lol. Like you my list keeps growing with ailments and the odd ones. I have been lucky though and avoided hospital.Cant imagine being in for that length of time. You have defo had the rough end of the stick. I hope you feel some relief soon,take care .

Ang x

[GrittyReads]

Have you been formally diagnosed with PBC? If so, have you been receiving Urso as treatment since 2009? The AMAs and high ALP that you mention are classic diagnostic features for PBC, and if so diagnosed you should have been receiving treatment. I'm not sure about the other ailments you mention, although a lot of them do seem to go together in people with PBC.

I really recommend talking to the trained advisors at the 'PBC Foundation' - link, above - as they are wonderful. They host this site in 'Health Unlocked' and work hand in hand with the UK's leading PBC specialists. It is free to join and their website has all the latest info on PBC, particularly it's diagnosis and treatment. PBC is rare, and a lot of Drs never encounter it, and often they don't know the correct procedure. I hope you are being seen by a good heptologist, and preferably one who is familiar with PBC. But please do talk to the 'PBC Foundation.

Take care.

[Cooper6 in reply to GrittyReads]

I am being "followed" for PBC, liver biopsy have been good, only reveal NAFLD, CT scans pick up hamartoma's, no urso though. Just LFP every 6 months at the closest major hospital which is still 1.5 hours away. The original local GI doc I had referred me for gastric bypass when the M2 became elevated and biopsy showed NAFLD. I had the GB in December 2012, and LFP's have gotten better aside from the episode that was really bad in 2015. Just accumulating more diagnosis.

[Hidden]

I'm sorry that you seem to have been collecting a lot of health issues and sounds like you haven't had the basic urso defence? I join Gritty in saying that if you join PBC Foundation you will be able to get more of an overview of your situation than you have just now. Armed with this knowledge you'll be in a better position. On a doctor's visit - you'll know what to ask and how to recognise that you got a satisfactory answer! And you need to be in a position where you feel that you know pretty much all the whys and wherefores that can possibly be known of your own case. Otherwise you will feel bad just because of unknowing before you can even start on managing all the other matters that you have to deal with. By the way, Collette at PBC Foundation is a master of "getting the picture" of the most confusing histories.

Your question "why does the right side of my body...?", and reference to butterflyEi's comment that her impairments are mostly left side, mine are on both sides, but each weakness is one side only, (left shoulder, right sinuses, right hand, left foot and hip). I supposed it is according to where the greater weakness was to start with?

I hope things get better for you quickly and that you let us know how it's going?

[Cooper6 in reply to Hidden]

I am in America will that make any difference to the types of information they can give me?

[Hidden in reply to Cooper6]

No - they are all over PBC all over the world! They are a very open warm and accessible small team of easily approached people, and the website is the same. For me, and I'm sure others here would agree, it's a bit like finding finding your way after you've been unsure which way to go and no one seems to hear you or answer you. They will hear you.

I hope things start to look clearer for you.

[monamayy]

Cooper6...first of all I'm so sorry for what your going through. It's a lot to deal with. I have PBC and on Urso. I also have hypothyroidism and taking levothyroxin. about 6 months ago I developed arthritis in my right arm a bad right knee and right ankle and my nail on my right hand (pointer finger) is split vertically. No matter how much I trim or file, it continues to split. All this on my right side of the body. I never noticed until you mentioned it. You hit the nail right on the head. The right side of my body appears to be aging faster than the left. Wth???

[Cooper6 in reply to monamayy]

Hey I had a similar issue with my nails and my dermatologist prescribed me Nuvail 16% solution by 15ml. I was AMAZED and how much it helped. It can be a pricey prescription, but for something that can be so aggravating and potential source of infection I think its worth a shot. It makes your nails look dirty while you are using it, I just got a manicure to get rid of the buildup but when I was done with it I have been good to go for more than a year and a half.

[monamayy in reply to Cooper6]

Thanks for the tip.