Back in June my rheumy said that one of my bloods was out of the normal range. It was AHP , connected to the liver. He suggested I have an ultrasound on my abdomen. This wasn’t totally clear so then had. CT scan. This has shown that my common bile duct is dilated, kidneys are fine as are my pancreatic ducts. No evidence of stones in gall bladder. Meanwhile I had a face to face appointment with my gastro consultant ( I have ulcerative colitis. , which has been very quiet for a long time), all my visits are in one hospital so access to all my records. She looked at the results of my CT scan and has suggested an MRCP , just to make sure. I’m just recovering from shingles and now this. Needless to say my anxiety is through the roof! I hadn’t had any symptoms as regards this bile duct but for the last 3 days have had pain in my upper right abdomen . Still have some shingles pain in that area too. The gastro’s next appointment isn’t until beginning of March. Still waiting for this scan. To add to this one of my dearest friends has been diagnosed with pancreatic cancer which is why my anxiety levels are through he roof, I was very shocked and upset and I’m trying to absorb this too.
I am now on 1 mg of pred and my PMR symptoms are not returning 🤞. Any advice/ comforting words would be much appreciated.
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York54
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It feels as if once you have one thing at our age, it's like buses, there is always another one behind or they come along in groups!
Whatever it is you have, it is being followed up and has been identified early. I have a colleague who has been living with pancreatic cancer for about 10 years at least and he is well up in his 80s (also at least!),
Nothing can change what it is - but they are looking for it so no point in panicking and making yourself feel even worse. And yes, I know it is easy for me to say xxxx
I heard someone explaining WHY that happens the other day!! One is late and picks up everyone who might have been aiming to catch the next one - something that takes more time and they become later and later. The next bus has correspondingly fewer passengers to pick up and isn't made any later - and the next one has even fewer. So they end up bunching up behind one another
Turning a worry into a feel good is hard at times. Sorry you are having these issues but PMR pro is right. One thing after another isn't nice. Hope you are sorted soon York54
Oh York54! What a horribly stressful series of events. You are going to have to take one day at a time and not let your imagination run away with you. You are unwell and suffering which compounds the anxiety and dread.The coincidence of your dear friend’s diagnosis will not be helping, I am sorry that all this is happening. I really hope you will be feeling reassured soon.
I have been called back for a more detailed cardiac MRI and am trying to remain grounded too. 🌷
It’s on the 10/12. Looking at the carotid artery, the Aorta and I think she said arms. The last one I had seemed pretty comprehensive. Maybe my Rheumatologist is being cautious and wants to know more. We have to surrender control to others - that’s the hard part for me.
We always want tests to sort us out, but when they are due we stress.....Oh, how I envy animals, they don`t analyse anything, get treated then go off for a run!
Yes, watched my son's dog recently with problem, soon as he was treated, normal routine, it upset my son and family at the time, they fretted about him, not the dog!...
Went to a group years ago called "Lighteni ng Process" the teacher said, 95% of what ifs never hapoen, but they affect us, he said it is mostly females that lie awake worrying......
Sorry to hear you’ve gone into medical panic mode; it’s horrible when that happens. Forgive me, but I’m confused. Are they querying AHP as in acute hepatic porphyria? Have they done the full urine and blood tests and genetic tests for it? If so, is the scan to rule other things out because they were inconclusive or your symptoms don’t fit AHP?
Hi...I have had raised results similar to this...2nd blood test to check? It can go back down too ....so easy to say try to be positive ...I am telling myself too.. whilst at the bus stop ha ha ..x
Gosh Sue, l’m so sorry to hear this & you’ve had such a trying time with the Shingles. The good thing is ‘they are on it’……If the Gastro Guy was unduly concerned your appointment would be within the Two Week Guidelines, plus once you’ve had the Scan you could ring for either the result and/or a sooner appointment to put your mind at rest but it sounds like it’s a just too be sure.
I’m sorry about your friend, it’s a hard diagnosis & you’re are naturally bound to be upset about that.
Good News re your Pred Dose - that’s fantastic - concentrate on the positives. Sorry the Shingles are still lingering - horrid condition!
So sorry to read you are on a 'one thing after another' run. It's so easy to say, but you can only deal with a bit at a time, and almost certainly can't deal with unknown's. Be as kind to yourself as you can and hope the shingles resolve soon. Once that is down the road you should have a bit more energy for the other things.
It's so easy to worry about everything isn't it? I know how you feel. I worry about every little thing. My ALP was raised all last year before I developed PMR, as was Gamma GT. I was told it would go back to normal in 3 months if I stopped drinking. But it took 6. Maybe it was a prelude to PMR and GCA. All you can do is follow advice and look after yourself as much as you can. Try to take some time out in nature. Maybe take your friend out for the day, if she's well enough. If you wake up in the night, like I do, try not to get into worrying. Get up and read for a while, have a warm drink and go back to bed when you feel more relaxed. Fingers crossed for you. 🤞
Thankyou Broseley. I try to go walking at least 3 times a week , not huge distances but being outside definitely lifts my spirits. I don’t drink very much , occasional wine or G&T. My friend lives in Yorkshire and me in the Midlands now so we speak on video calls. X
Ah that sounds familiar ! I was in A&E in February - had tests and scans over 2 days to be told I had an enlarged bile duct. I was suitably worried until a consultant told me a few weeks later that it’s age related and apparently normal? Hope he was right and I hope you are feeling less anxious!
Please don’t worry - predictive text can be a pain I know! Vomiting , abdominal pain and bloating , weight loss and just felt ill ! Hence all the tests. However 2 weeks of some rather nasty antibiotics seemed to sort it out although they never knew what had caused it! X
Hello, sorry you are having more things to worry about. It may be reassuring to hear that I had a similar thing, dilated bile duct, I had already had my gall bladder removed years ago. The MRCP found “gravel” and they washed it out. Upper right abdominal pain has now gone. My liver enzymes have been raised for years too, non alcoholic fatty liver apparently, but they get no worse or better so I ignore them. My liver is determined to stay fat regardless of diet or how much weight I loose. Best wishes.
I don’t know whether I can reassure you, but one of my liver blood tests was alarmingly high recently. I have had my gall bladder removed some years ago and have a large liver cyst that is not thought to be too much of a problem. I too have had right high abdomen pain and discussed this with the GP. He said that it is probably raised due to the medication I take because all our medicines are quite toxic, especially if taken long term. Also my body doesn’t manage bile supply well because I have no gall bladder, but a friend of mine has similar pains and her gall bladder was removed only to find lots of sludge, but no stones. She was told told to eat no fat whatsoever for 24 hours and if the pain went away that was probably the cause. The liver doesn’t need to excrete bile if there is no fat eaten. I find drinking plenty of water really helps. We are all different but it is sometimes good to know that there are often many reasons for the variety of results and symptoms we experience and it is easy to think the worst.
I am sorry you are going through this. I think having shingles may have cause some degree of further inflammation which may have contributed to this as well as ongoing low grade ulcerative colitis. I think there is some association with UC and primary biliary cholengitis. It good your gastro is suggesting this but it may be worth asking about the urgency of MRCP as you are just now recovering from shingles. May be your inflammation from the virus will come down and may be just fine and nothing to worry about. I had a very similar issue but was never diagnosed properly with mild pain on the right side and then stools changed pale. It was during H.pylori infection last year.
Sounds like you have "cancer head". I am a cancer survivor. I was also my mother's primary caregiver with stage 4 colon cancer. It took me 20 years to get over having "cancer head". Having had cancer or having a loved one with cancer or who has had cancer causes a major total freak any time undiagnosed symptoms happen. Cancer survivors call this "cancer head". Not meaning it is always all in your head, it just means we have a tendency to have total wild-eyed duck fits anytime something weird is happening.
So,, settle down, take a very deep breath, let it out, and think this through. Do you have symptoms of Pancreas problems? Believe me, they let their self be known. I have had a few bouts of pancreatitis, mild, and boy oh boy. It is not a quiet little organ when it is pissed off.
How are your other numbers? There are many blood markers that can indicate cancer.
Many years ago, before my PMR/GCA was properly diagnosed, I was a substitute teacher. One fall I kept picking up viruses from the grubby little snot noses. Finally, one of the viruses settled in my liver. Yes, my liver. I was blown away when my primary care provider told me that an ordinary virus can attack any organ in our body.
It is no coincidence to me that you are getting over Shingles, a virus, and you are showing up with some stress to your digestive organs, especially with the ulcerative colitis.
So, don't go all "cancer head" until you have more reason too. 99% of the things we worry about never happen. And, do not, do not, believe all of the things you tell yourself late at night.
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