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Discussion Starter · #1 ·
hi i live in peterhead scotland originally from england, ive been unwell for some years at christmas 2007 i had a liver function test which came back abnormal followed by a further abnormal test result to cut a long story short i have recently been tested for autoimmune disease which came back positive my symptoms are extreme tiredness severe joint pain weakness and stomach cramps, stabbing pains in my eyes whith a white discharge in the corners my doctor is not very helpfull and does not know what to do with me. any help or advice would be greatly recieved i feel very much alone with my illness
 

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Hello and welcome :)

I'm sorry to hear what brings you here but want to reassure you, it will get better!!

From the sound of your sypmtoms it certainly sounds like you need a referral to a rheumatologist. I presume the unhelpful doctor is not one?
On the whole most docs know little or nothing about auto-immune diseases which are extremely complex.

I know that it is not necessarily easy to find a rheumatologist specialised in auto-immune diseases but there is a section on this board where you can post to "find a lupus doctor". it would be a very good idea to post there (even if you are already seeing a rheumy - as a second opinion seems necessary).

If I understand correctly someone suspects an auto-immune disease but you haven't been started on any treatment?

Feel free to ask plenty of questions, we're here to help as much as we can.
In the meantime, I'll send lots of hugs and virtual Belgian chocolates as it sounds like you are in great need!! :hug:

Katharine
 

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Hello, You do need some better medical support.
Firstly, is there a more helpful Doc. in the Practice you go to? Try befriending the Receptionist of Practice manager to see if any of the Docs. have an interest if Auto Immune or Rheumatology.

You do need a Consultant on board. Maybe a look through the Find A Doctor section on this board will help you.

I am not surprised you feel alone, but you will soon learn a lot here.
Please do not look at old information about Lupus , treatments have improved a lot in the last few years, and you could scare yourself unnecessarily.
x Lola
 

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Hi there!

Just wanted to say a BIG HELLO;)

I've been here only a couple of months and let me tell you that everybody is absolutely fantastic and there isn't a qeurie they can't solve. Everyone has helped me understand so many things and I'm sure that you'll feel just the same.

All the best Mrs M xx:wink2:
 

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Discussion Starter · #6 ·
thanks for replying im not very computer literate so hope this message finds you. ive only been given co-codamol for pain which doesnt always work. doc doesnt explain anything and brushed off that i had tested positive for autoimmune disease so does any body know what it means
 

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Discussion Starter · #7 ·
thanks lola for replying not very good with computers,do you know what testing pos for autoimmune disease means
 

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Hi there,

I am presuming that when you say that you tested positive for an auto-immune disease that you tested positive on the ANA test?

The ANA test is a basic "screening" test which can indicate an auto-immune disease. It is not specific to any particular auto-immune disease though if you have a very high titre is is a strong indication of lupus.

Many people will test positive on a lower titre for many reasons. Among them things like infections, genetics etc. A low titre would most likely be ignored by many doctors even if "officially" it is positive.

If you have a high titre ANA positive test, the doc will then order more specific antibody tests which can help distinguish which disease it is.

Auto-immune diseases are highly complex and blood tests are only one part of the diagnostic process. You also need other symptoms and criteria to obtain a diagnosis.

If you take a look at the diagnostic criteria at the top of the "not diagnosed yet" section this should give you better idea.

This link also explains the basic bloodtests a little
http://www.lupus.org.uk/article.php?i=39

hope that helps,
Katharine
 

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Hi Greenheart,

ANA is the test that shows auto-immune involvement of some sort (I think!).

I see at my Medical Practice an alternative GP to the one that I'm registered with. This is due to the fact that the registered one treats everything I have as a virus and the other one is willing for investigations to be carried out (there are approx. 10 GPs in total at this practise). At a practice in England you can book to see whatever doctor you want not just the doctor your registered with at a practise! If you dont like the doctor you have been seeing you dont have to see them again whatever they wish, you can see any doctor in the practice!
Perhaps this particular doctor has their own interests in mind when requesting that you need to go back to them!

Remember your health is more important than the politics of the PCT or NHS - if you want to see someone else then insist upon it!

Take care and good luck!

Lesley

PS- I do have a SLE diagnoses and still get treated badly by some GP's - I choose who I want to see - they dont choose me!
 

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Discussion Starter · #10 ·
thanks lesley courage is one amongst many things i lack, i asked my doc to look at possibilities of lupus so she requested blood tst for this otherwise the tst wouldnt have been done, i will try to be more assertive. at min waiting for endoscopy and colonoscopy biopsy results which were done 3 wks ago xx anna
 

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Discussion Starter · #11 ·
thanks katharine i have alot of symptoms,joint and back plus hip pain i cant think straight and forget things which i find scarey im only 42, just out of interest i started the menopause at 32 it doesnt run in the family xxanna
 

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Yep, those symptoms certainly merit further investigation.

I would do as greenhaggis says and maybe see another GP and ask for a referral to a rheumatologist (one who specialises in auto-immune diseases).

good luck and keep us posted,
Katharine
 

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Hi Anna,
Just wanted to say welcome and i am sorry you are suffering with so much pain.
I can't really add anything to the good advice you've already been guven but just wanted to send my best wishes to you and hope things improve for you soon.

:)

Take Care

Cassie
 

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Discussion Starter · #18 ·
a big thankyou

i would like to say a big thankyou too all who have offerd advice and encouragement to a newbie who hasnt much confidence:), it has helped me alot to know that there are people out there who will lend a friendly ear when needed i now feel stronger and able to fight my corner:calm:anna xx
 
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