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precious (@precious)

Primary Biliary Cirrhosis.

Digestive Health | Last Active: Nov 22, 2012 | Replies (13)

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@tb106

In 1996, at the age of 47, I was diagnosed PCB (by my very bright family MD)–a woman, who immediately sent me to Mayo. I was in the original trial studies for URSO and it is a good send. At the time of my diagnosis my prognosis was (due to no treatment) a decline in health and liver transplant. It was right after the death of Walter Payne from a similar disease. It was grim dx and at that time I was asymptomatic as my MD dx it so early. But despite URSO my health has gone down hill. I now have 5 autoimmune disorders as well as intractable chronic migraines and trigeminal neuralgia for which I had unsuccessful brain surgery. I have never talked/emailed anyone who had this disorder. It was not until I read the posts here that I understood my ‘hit the wall’ days when I absolutely cannot get enough sleep. I have been on disability since 1997 but continue to work part-time and do academic work (my profession). I am sorry to hear about the itching problem. For me this is minor although this year I have developed eczema which is slowing spreading across my body. It has been discouraging for someone who was super energetic and multitasking to have to ‘ratchet down’ my life and career. With my other health problems it has been difficult but I also feel grateful for an early dx and treatment. I am glad to find others on this site and I will go to PCB.org.

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Replies to "In 1996, at the age of 47, I was diagnosed PCB (by my very bright family..."

I am so sorry that it has been so hard for you. I wish you the best.

How very kind of you to write with words of encouragement. I am glad that you are able to keep so much of your life going in a positive direction. In the past 3 years I have also changed my diet and this has been very helpful. I do wish this was less a ‘discover on your own’ process and something more straightforward. I have found my way to basically your diet through a process of elimination–eliminating foods that made me uncomfortable. The exercise issue has been more of a challenge for me because of my other health problems. Recently I discovered swimming in a very warm pool (at a special medical center) not only an exercised that ‘worked’ (didn’t cause other problems to flare up) but is also enjoyable. I am hoping this will be something I can continue. My biggest challenge the last few years has been trigeminal neurelgia. After years of failed treatment trials which I refer to as the ‘throw spaghetti at the wall’ approach, I am now on a pain patch which has absolutely changed my life. I am now 95% pain free for the first time in at least 5 years and feel like myself again. However, psychologically it has been one of the MOST challenging adjustments to date: to accept and ‘give in’ to the reality that I need a pain patch to live my life. I have never smoked, drank, used anything ever in my life and I just never thought I would have to do this. I agreed to try it as a trial–like so many other ‘lets try this’. Nothing else has worked–really NOTHING including pain management programs, etc. Apparently my form of trigeminal neurelgia has morphed from the garden variety that is treatable through surgery and/or medications to something like a super-horror condition in which I had excrutiating, intractable, chronic pain every day that was barely managed with pain meds. Because of my liver and other problems I couldn’t tolerate any of the neurological meds. I was on Vicoprofen but would only allow myself 2 a day which meant I was incapacitated by pain. I refused oxycotin because I didn’t want to be addicted. Now, after a month trial, I realize that the life I had been living for 5 years was really no life. Because of head pain I often did not leave my house for weeks at a time because if I went outside my face would trigger pain, which triger a migraine which left me with days in bed unable to function. So I am now on the patch and I have come to terms with it. I probably will never be 100% happy about it–I am always going to be looking and hoping for some alternative. But if this is what I have to do to have an actual life where I can go swimming, enjoy my grandsons kisses (rather than physically cringing inside from the pain) than I will go with it. I guess I have no choice but I am now ’embracing’ the choice–yet still hoping.
Sorry for this long reply. I just wanted to say you are an inspiration and also how kind of you to send words of support my way. I appreciate it.

I was speaking to my friend yesterday about the lack of knowledge that the medical world has regarding many diagnoses. Although medicine has made great strides it still has a long way to go. Nutrition definitely is lacking and most doctors don’t know and can’t advice on nutritional changes.
I can’t imagine having intractable pain. You’re right, with liver problem you can’t tolerate Lyrica, Neurontin or anything else. Even Motrin is a problem. Did you ever try Accupuncture? Sometimes other forms of medicine have good outcomes.
Well, keep going and never give up!

Thank you for writing back. I was afraid I had been a bit TMI and put everyone off. I really have not shared that much about my health challenges –not even my children really know. I feel it will put people off and I will feel even more isolated and weird. So I am relieved and pleased you wrote back. And thank you for the suggestions. BELIEVE ME: I have tried everything!! Well, I shouldn’t say everything because I haven’t tried marijuana or any other kind of herbal thing because I really don’t know how my liver would handle it (I have had really bad experiences with the FDA meds so was just plain scared of anything else–like I needed more problems). At one point I had myself convinced that reflexology was really the ticket for trigeminal neurelgia but it was a good example of ‘wanting to believe’ and also an example of really really wanting something to work doesn’t mean it will. So I have been on both sides of that experience. I think exercise and massage really help for relaxation and when you have chronic pain the muscles just tense no matter how much meditation you do. So I have found that to work as an adjunctive method along with prayer. It takes you out of the here and now and makes coping ‘easier’. It still feels like Sisyphus but I am not giving up. There must be SOMETHING to be learned from this if not by me than others or medicine in general. Than you again. It means a lot that you wrote back.

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