I am new to this group and am happy to find people to share ideas and experiences with. I was diagnosed with PSC and UC over 20 years ago. I enjoy health for the most part with minimal meds. However, over the past 5 years I've had some ups and downs. I had a strange and sudden bout of neurological symptoms about 4 years ago. They came out of nowhere and no answers were ever found, but during the episode I started having severe upper quadrant pain and which took some time to resolve...again with no answers. My doc said, "PSC hurts." (He's telling me?) Anyhow, the past year or so I have been doing pretty great. I eliminated dairy and gluten from my diet and my gut thanked me. In the beginning of this year I came down with a flu-type illness and was knocked out for a week. My cough was pretty bad, so I figured when the right side of my back ribs started hurting it was simply muscular pain from coughing...over the next 2 weeks it became clear that the pain was the mysterious upper right quadrant pain coming back. Everything I read makes me believe it is my gallbladder. But they did a full work up on my gallbladder last time I had this pain and they never turned anything up. My blood work looks good. I had an ultrasound today, so we will see.
Sorry to go on...I will get to some specific questions.
- Has anyone ever experience neurological symptoms such as weakness in the limbs and trouble walking?
- Has anyone had trouble with their gallbladder? Did you have it removed? Are you happy with the results? Do you have concurrent inflammatory bowel disease?
- I am conservative with procedures and meds...I try to go the natural route whenever possible. Anyone tried turmeric?
Okay...that is a can of worms I opened. If you made it this far, I appreciate your time.
I hope all of you are feeling well and enjoying your day.
I've had PSC and UC which is well controlled for fifteen years. If I get right upper quadrant pain, it's due to not eating enough bran cereal. Is that something you could be experiencing?
I don't believe in alternative treatments for serious illnesses. In fact turmeric would do me more harm than good since spices keep me up at night itching.
Alternative treatments are about somebody making money, usually at a worried woman's expense. There are some exceptions which bear up under research.
Heart to Heal, I would guess the quadrant pain as as gall bladder or cholangitis infection that periodically raises it head. The key with the gall bladder is ongoing thickening of the organs walls and polyp development seen through MRIs and CAT scans. I just had mine out (and a lot of people do with no adverse consequences) and they found cancer . It appeared to all be in the GB but this cancer has high recidivism withUC and PSC, all of which I have. Ask your doc how the organ has been appearing in scans over the last couple of years. Good luck. Rod
I've had PSC for about 5 years and developed IBS in the last 2. My gall bladder was removed early on, with a non-liver specialist thinking that was my problem (before being diagnosed with PSC). I don't miss it...
I take Turmeric pills (one a day) for arthritis relief. I don't think for me it has affected itching or anything else PSC related.
I also take a wide spectrum probiotic to help counterbalance the effects of IBS and taking Cholestyramine. It has helped restore some normality to my gut and bowels.
I had PSC for 4 years and have been taking Ursodiol for all that time and reduced the amount of 4pills to one pill because I hear it really don't do much good and is expensive and I'm doing fine.
I been taking turmeric for about a year now because I hear with rats it makes them better.I have been feeling fine.Turmeric is the only thing that seems to help or cure PSC I hear.
I seem to have got this PSC after changing to a new blood pressure pill.All my liver enzyms were fine a week and a half before.I think the Blood pressure pills triggered it.
I too have had some dizziness in the last two weeks, however had a slight neck injury while riding a snowmobile two days prior to the symptoms. I do not know what really caused the dizziNess but sometimes I get some symptoms that I can't explain by anything else (right foot feels tighter or slightly swollen even though it does not look it). I will get some slight muscle weakness but usually after I sleep and my arms have gone numb throughout the night. I get occasional pain in URQ but nothing that drops me to my knees or lasts for a long period of time. And regarding the person who posted above me, I too was introduced to a blood pressure medicine around the time I believe psc showed itself (lisinopril) for me, but my the docs of course don't believe that would be a cause, as if they have any better ideas. I feel like sometimes I go crazy wondering if the symptoms I feel are in my head or no big deal as my family always tell me I'm over sensitive about symptoms but then I read discussions here and realize that I'm experiencing a lot of what others are who suffer from this, not sure if that makes me feel better or worse... haha
Hi -- I'll chime in with my experience too. I'm also new to the group. I was first diagnosed with UC in 1968, PSC in 2006, and auto-immune hepatitis in 2010. Actually I was diagnosed with the PSC when they took my gall bladder out. I had the surgery after a bout of extreme pain, literally rolling on the floor of the emergency room moaning, literally untouched by morphine when they finally did get to treating me. And I'm no baby about pain, having dealt with UC for 45 years.
My Dr did various tests and puzzled about what it could have been, and as far as I remember he never did conclude definitively that it was my GB. He just couldn't figure out what else it might have been, and hey, it's a pretty minor surgery and kind of useless organ, according to him. It definitely was a pretty easy recovery, the surgery was done laparoscopically and I was up and about the next day, rode in the car 4 hours to a retreat, etc.
The big deal for me with no GB plus UC is that I'm very sensitive to fatty foods, or as a friend who had his GB out too (no UC as far as I know) said, eat anything more than minimally fatty and "it goes right through me".
You mention that your lab work looks good. Mine generally usually looks good, too. And there was no exception around the time I had the GB attack. The way my Dr described it, it was the smooth muscle tissue of the GB that results in the pain, at least in my case where there was no specific gall stone that was trying to pass, just "sludge". Meaning that in my case it didn't result in infection, raised liver numbers, etc.
In my personal experience, gall bladder problems and gallstones in the bile duct preceded the PSC diagnosis. Since bile flow has been gradually diminishing in the course of PSC, fatty foods added to the Ulcerative Colitis problems. Medication in my case has staved off the UC partly. If loose, floating, fatty stool or diarrhea occurs, I was advised to take half an Imodium caplet in addition to the UC medication..
My sleeping patters are also affected causing me to have difficulty falling asleep, waking up and not being able to go back to sleep in the middle of the night, while also being unable to wake up in the morning after a fairly long sleep.
Since PSC problems originate in the liver complications such as Portal vein hypertension and fluids in the abdominal cavity can be expected. In my case diuretics were prescribed.
Some of the problems discussed above also occur with aging. To date I have not experienced neurological problems.
I had PSC for 12 years and had my liver transplant two years ago. I am PSC free, but your post and questions brought memory back to what I experienced. Gall Bladder disease is common with PSC. I had mine removed and all got better. As your liver deteriorates, ammonia is not removed efficiently. It caused memory and balance problems in me. The condition is known as encephalopathy. Cholestyramine powder and Lactolose syrup are two medicines that helped reduce the effects of ammonia. The are Rx, and you might want to discuss your symptoms and whether these two drugs are right for you. You mention fatigue. Yes, that is part of PSC. All I can tell you is do what you can and don't blame yourself for what is left undone. Keep a positive attitude. Don't give up!
I was in very bad shape when I received a transplant. The memory and balance problems were cured. It was amazing how my new liver (donated from a living person) made such an immediate effect. I like to let my experience help others struggling with PSC. If I can help you more, please let me know.
Thank you all for your thoughtful replies and posts. I appreciate you sharing your experiences. My ultrasound showed no changes from imaging done a few years ago. This is good news. My pain is lessoning and I am getting out of health crisis mode. The doc wanted me to do a HIDA-Scan. I am unsure if I will do this. I try to to chase my symptoms if I am unsure if the treatments will be something I am willing to do.
For now I am considering options and hoping for health.
I hope you all are feeling well today.