I so waited to see neurologist for all the pain I'm in and he discharged me as after all tests and scans and him being informed of my pbc

[karenlesley]

He says he can't help me as the pain isn't caused because of pbc help

[mumofthree]

If he says the pain isn't because of PBC then that suggests he has some idea what it could be, if he doesn't he should refer you on to someone who would know.

A similar thing happened to me but that was almost 11 years before I was actually diagnosed with PBC.10 weeks after giving birth to my last child I developed severe pains in my fingers, hands, toes, ankles, elbows and knee joints. My GP thought I may have been suffering with viral arthritis and referred me to a rheumatologist. It took 3 years before I finally got the appointment, when I rang to check where I was on the list I kept on being told I was not an urgent case and would be sent the appointment as soon as I got to the top of the list. In the meantime I self medicated with over the counter pain relief. The 15 minute appointment with the rheumatologist was a complete waste of time, he looked at me, checked my joints and told me I did not have arthritis and sent me off to have an xray. He didn't even have the decency to give me the results of the xray himself, he sent a nurse to speak to me in a corridor full of other patients who told me my xrays were fine and he was discharging me. I had intended on asking him if it was not arthritis then what could be causing me to be in so much pain but did not get the chance. I lost all faith in the medical profession after that and continued to self medicate and suffer in silence so to speak.

I had a 2nd referral to a rheumatologist in 2009 after being at the end of my tether with pain, this time querying rheumatoid arthritis. On this ocassion I only had to wait 3 months for my referral to come through. I had numerous blood tests, scans , xrays and an MRI and was due to go back in Jan 2010 for the results. The results appointment did not happen for 15 months. I kept on being put off with various excuses - Dr on holidays, once again 'not an urgent case', Dr has left etc etc etc. Out of the blue in April/May 2010 I received a letter from the Gastroenterology Department confirming my referral to them - I rang them saying that I thought there had been some mistake as I did not have anything wrong with my stomach. They confirmed I had been referred to them by the rheumatology dept querying the results of a blood test that they had carried out on me. My first Gastro appointment happened in Oct 2010 when I was told that the blood tests showed I had PBC but it would be confirmed following further tests. PBC was eventually confirmed in Jan 2011 following more blood tests, scans, MRI and Live Biopsy. The rheumatology department actually sent me an appointment in March 2011 to give me the results of tests they had done on me in Nov/Dec 2009. The Dr I saw thought the tests had been done in 2010 and was shocked when I said otherwise and was full of apologies. They diagnosed osteoporosis and osteo arthritis and discharged me into the care of the GP's.

[EAJSWW]

You could also ask to be referred to a pain clinic. I went to the pain clinic for several months, mine was run by an aneasthetist who was excellent. As a consultant they also have the ability to re refer you to other specialists if they feel they need to .

[mumofthree in reply to EAJSWW]

Is it through the GP that you got your referal to the pain clinic? I have been prescribed various combinations of pain relief by the GP but am struggling to find an adequate pain relief.

[EAJSWW]

my liver specialist referred me, but my brother was referred to a pain clinic for a different reason by the gp, so i think both can refer

[Hidden]

I have just been refered to the pain clinic by my gastroenterologist. I also whent to rhumatology and they were no use whatsoever, I saw the registrar who was no more than a child and was more interested in one upmanship with my husband over blood results and telling me all the pet names they have fro other dr's, like My gastro is known as "Mr T" and the bone clinic dr is called dr kate ect, why I needed to know this I will never know. The he signed me off, saying he could find nothing.

[gizocsi]

All these histories are wanderful. I thought it was like this only in my beloved East Europe. (By the way we have reum dr in only 2-3 months already, just they are very tired for very bad saleries and really much work)

What can we do? Eg. self cure sometimes like this, suggested by a very good doctor (now under charge, terrific story and inpossible thing, her name is Ágnes Geréb, please find a way on internet to support her cause if You have a little time!Many thanks!):

As for my very bad headaches the following thing helped: visualisation of the pain in a way of answering questions like how big is the pain? Like a melon or a tennis-ball? Whats the surface like? Thousands of sharp needles? Plastic hedge-hog like thing? Whats the smell like? And the taste? You have to ask similar questions and so describe it in all details. In this way it happend to me that the pain disappeared, mostly became smaller. Just repeat all the questions several times quietly. Time is a thing what we can have if there is the horrific pain.

Be well!