Are we ALL mad???

[Lisacj]

I have spent close to a month on this site and without you guys i dont know where i would be, so thanks xx Now hold tight because here i go,,,,

Almost every blog comment on here is of a desperate need for help from doctors and consultants. I cannot beleive how we are treated as if we are lucky to be in the same room and it is all no problems. I was told by my consultant i was lucky because it will proably be a whole decade before i need a transplant!!! Well not one of them have PBC, nothing i read lists all the crap we live with, the disregard we are treated to...the lack of real people to listen to who actaully care...It is not just fatigue, itch there are loads more horrible symtoms we all put up with, can any one offer real help. The foundation is good but i have to say even their information is limiting to the basics, there has to be more thorough information out there for us and most certianly the medical professional that are mean to help.. Finished rant, and once again guys you have saved me on so many dark ,lonley and painful night xx

[Magnolia]

Lisajc, rant all you want! I'm reading the same thing in all of these blogs and questions, it seems Drs or medical personel aren't offering enough help for all of those going through roller coaster symptoms. Made a list for my husband to take to his PC one time, and the dr. cut him off and said, " wait a minute you only get three questions"! They are determined to allow you 15 minutes for if not, it cuts thier pay.

Magnolia

C

[June9961]

Ditto to both comments. In our surgery newsletter it was stated that you can only present with ONE ailment per consultation. When you ask for an appointment it can be in a week or two time depending on the dr you want to see, plus living in the country means you tend to take advantage of this precious appointment to speak about everything. As you say pbc has many symptoms so I try to discuss them all in one visit otherwise I would be there every other day. Now I cant. This week my knee locked and I was taken to hospital. The A&E consultant I saw asked how long my knee had been bad to which I replied since last June and had been complaining about it since. She asked what the doctor had done about it and my reply was that the doctor decided it was arthritis tied in with the pbc. She is going to write to them because I should have been tested/treated much earlier. After xrays and blood tests she was able to confirm its not arthritis but a cartlidge problem and I will need an op. I am annoyed with my dr! I think what happened was that I have recently been to see the docs because my bloods have been bad as has my symptoms and quite frankly they are fed up with me going. I was even thinking of changing drs, my nearest being 12 miles away, time will tell. Thanks for allowing me to get this off my chest

[bobbycat]

It is the same with fibro myalgia and TMJ ..both painful especially the TMJ...so far my PBC consultant is OK but I only see him once a year, my GP..one of them in the surgery is quite good too but they are limited in knowledge re PBC and the other two things I have.....I look up a lot myself on the web. It would be so good to have real time with a medical person.....it is not theGPs fault always....if I win the lottery I will go private!

[Rosehip19]

Oh, how I agree with you all! I am fortunate in that my PBC doesn't cause me too many problems, but I do need proper medical advice from time to time. I see a liver consultant once a year (basically consists of "yes, you've still got it, come back next year"). Last year I asked if there was anyone I could contact if I had a problem and was told 'no, go to your own doctor'. In my GP practice you see whoever happens to be available - and none of them know half as much as I do about PBC. So I am totally unsupported from one year's end to the next. The Foundation is marvellous, but of course they can't give you specific medical advice. Grrrrrr! hadn't realised that I too needed a good rant! If you have been, thanks for listening.

[SC49]

i agree with a lot of what you say - I think our biggest problem is to be cursed with an illness that is uncommon and seems to be a different experience for everyone. I've never heard of 2 people having the same set of symptoms. That means most of what we experience is unpredictable. It seems only to follow a predicable course once we get to the actual cirrhosis stage. At that time, the course of our disease seems to have much in common with other liver diseases so the specialists have more knowledge and more experience and they seem to know what to do. I have some sympathy with consultants who are confronted with a group of patients who have the same illness but a whole host of different experiences. They just don't know what to do with us.

My sympathy ends when they seem incapable of accepting that all of the experiences are valid and real for us. And they seem also to be incapable of using Google (at the very least) to see if there is anything to be learned there. I always feel like they are telling me that it is all in my head!! So to answer your question, yes... as far as some 'specialists' are concerned... we are all mad.

I would disagree with your thoughts about the Foundation. The information on the website is quite generalised BUT when I was first diagnosed it was a godsend for me. I learned a lot about PBC from the generalised information. The basic information was all I needed at the start - it helped me to get to grips with the illness and to explain it to other people.

Once I had absorbed all the basic information, I found the PBC Compendium to be invaluable - it contains a lot of detailed information which is beginning to make more sense to me as time goes on.

I suppose the Foundation is only as strong as it's members. It is a relatively small organisation with limited resources. Like all small charitable organisations, it is probably fighting for survival in a very competitive funding environment.

Maybe, with the help of the Foundation, we all need to find ways of contributing to what the Foundation does- in terms of sharing our experiences of PBC and health care, of employment and benefits issues, of campaigning and fundraising etc. It's clear that we are a clever bunch with all kinds of skills, knowledge and experience.The sad thing is that once you're ill, it's very hard to get it together to do anything more than keep going day to day!

[mumofthree in reply to SC49]

I totally agree with what you say about the PBC foundation...Both they and this forum have been an absolute godsend to me.

The PBC foundation needs all the support it can get... its a charity at the end of the day kept going by fund raising and donations. Without the likes of Collette and her team we would not have the wealth of information and support that we have available to us 'FOR FREE'.

[Rosehip19]

Don't get me wrong - I did say that the PBC Foundation was marvellous. Which it is. I attend as many conferences as I can and fundraise as hard as anyone, Collette is my absolute heroine. But she did explain to me once that as far as personal medical advice is concerned, none of them are qualified doctors. That was the gap in care I was trying to identify.

[Becca75 in reply to Rosehip19]

I'd love to go to a conference.

[Lisacj]

Hi All, I agree without the foundation we would really be stuck, what i was saying is thier list of systoms is small compared to what i read here , and diet help is limited. They are brilliant, and we are all grateful to the people that work there to help us all. My biggest gripe and it seems universal, is lack of medical help and advise. I feel I am demeaned by medical people because of their complete lack of knowledge, they have no right to make any one feel small and insignificant and intimate we are hypercondriacs..My consultant told me nothing, no diet help, no life style help, all he said is i would probaly make a decade before a tranplant was needed,good hey??See you in 6mths.No help with the pain or nausea or bloating, my respiritory Dr prescibed meds for these and was "surprised" I quote, that he hadnt. Wow she must have written to him as I have just had a letter they have bought my appointment with him forward from June to May!!She said she would.

I am thinking of making a list of systems from all of us to offer as an up date so we know we are NOT mad xx What do you all think?

[skywalker]

Doctors don't like the idea that we can educate ourselves, it highlights their incompetence especially when their challenged with questions they can't answer!

Thank God for the internet so that we can find support and educate ourselves.

My doctor is so stuffy and his bedside manner leaves alot to be desired..... If you go in for one thing and mention another, he'll say, I'm sorry I thought we were talking about so & so are you now talking about a different symptom?? I've contained myself and my tongue for too long with him, and the next time he be-littles me, I'm going to let him have it, both barrels!!! He even sighs sometimes....... Next time he does that I'm going to ask him if I'm keeping him up!

There is currently loads of support and information for cancer patients but zilch on PBC, Other than the foundation of course!

They treat you like they're dealing with a sore knee, makes me angry

[Silvers]

I have PBC and an underactive thyroid............. I have really been suffering with itching / burning skin for 16 months........... it was driving me insance. Nothing the GP prescribed helped.... well apart from sleeping meds as I need to sleep as I work 4 days a week, look after my gorgeous granddaughter on a Friday and I care for my elderly dad and do his shopping, cleaning, walk his dog etc....... As I said to my GP I DON'T have time to be ill.

So I have taken my health into my own hands and started detoxing, also changed diet and I am slowly going off meat, fish, chicken etc.... I eat a lot of raw veg and fruit, did a major detox this past weekend and have had some alternative therapies and acupuncture. I am also getting my amalgam fillings out.

Today I am feeling so much better and since day one of changing my diet I have only had a few bad days of itching / burning. My body is a lot less swollen and I have dropped a dress size. My energy level is really good and people have commented I look healthier. I am currently only taking 1 sleeping med, thyroid meds and supplements. My brain fog is lifting and I generally feel a lot better. It is early days and it will take time but I am actually enjoying detoxing as my body is getting better. Just think I was supposed to get liver biopsy in January and speak to Edinburgh Transplant Team in Feb but was cancelled!!

I did have quite a healthy diet with spinach smoothies, strawberries and raspberries but I think my body is so toxic and ill that I have developed something called Histamine Intolerance and lots of healthy stuff that I was eating is high in histamine so once I changed diet the itching / burning really died down!

I hope this post gives people hope that things can get better as I was really ill but I do think we have to change our diets as our food chain is terrible these days......

Hugs

Sx

PS I am going to look into doing yoga as my stress levels were and still are a wee bit too much. Since 2006 I have been looking after family who have been ill. Sadly I lost my mum to cancer in 2010 and my 85 year old dad is coming home from hospital today.

[mimib]

Hi all, is't the main issue that your consultant only deals with the liver so that any connected conditions have to get looked at by either your GP, dentist or a third party. My consultant signed me off over 18 months ago with the comment to get a full blood test at the GP's every year including for alpha fetoprotein (for liver tumour markers) and only come back if there was an issue. Not the most helpful of situations and he wasn't interest in memory issues, dental or anything else that comes hand in hand with PBC.

[Lisacj]

This sounds odd to me,PBC throws many things into the equation.I am waiting to see an immunologist. With PBC it seems that the immune system is compromised. I have 3 immune diseases so having them taken into account should ,I hope, give clear picture of what my whole body is doing.I notice on this site that most people have 2-3 ailment of immune related order. So to me i assume that the immune system we as whole people need looking at,, i have spent 3 years going to different consultants, i am now hopeful that this one immunologist will pull together all my ailments and to look at me as a whole?? Will et you know.

[Becca75]

OH I so agree with you! My family doctor told me that having PBC isn't a hardship by any stretch of the imagination. just because they may treat it doesn't mean that they KNOW what it's like to live with it. I think empathy is something that needs to be focused on more in med school!