confused!!: Hi !! i have p.b.c diagnosed a year ago... - LUPUS UK

LUPUS UK

31,716 members28,082 posts

confused!!

hettie01 profile image
9 Replies

Hi !! i have p.b.c diagnosed a year ago , i have been told i have another auto immune disease because it has shown up in my blood. i was sent to a consultant because it said i was strongly positive for scleroderma. i had a barium swallow test and it come back i didnt have scleroderma even though it showed up in my blood . I am struggling and confused as i know not all my symptoms are p.b.c related, just to mention a few symptoms , itchy .brain fog,fatigue, joints swelling, numbness, rib pains, pains in legs .fingers swelling, etc . I was just wondering if anyone with lupus can relate to my symptoms ???? i see my p.b.c consultant 15th December, i just want to know what is going on in side my body and hopefully get some medication to help me feel better ,as i have been of work sick for 3 months now as im just not able to work while i feel so lifeless . Any feed back would be very appreciated Thank you .

Written by
hettie01 profile image
hettie01
To view profiles and participate in discussions please or .
Read more about...
9 Replies

Nope but I have scleroderma and I can

gazorpf profile image
gazorpf

First of all, lupus carries with it many of the symptoms you describe. You must have had some problems swallowing or with your upper digestive tract if they ordered a barium swallow or they found scleroderma autoantibodies in your blood and wanted to see if you had active disease. A huge number of symptoms for both diseases are the same. In addition, if you have one autoimmune disease you probably have more than one. This is common. It takes time to bring these diseases under control, months or more. Work patiently with your medical team to find the treatment plan that works for you. It is different for each patient. All the best.

hettie01 profile image
hettie01 in reply to gazorpf

Thank you for your reply ,yes it was because i had something show up in my blood also find it difficult sometimes to swallow ,my medical team have been amazing i really carnt fault them .Just be nice to feel better but i agree i need to be more patient.Thanks.

ripon1756 profile image
ripon1756

Lupus is just used as an excuse for many ailments.

A better idea would be to eliminate any allergies you might have.

I can't understand why doctors haven't done this before - what are they afraid of or who are they afraid of?

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi hettie01,

The symptoms you describe are commonly associated with lupus. Unfortunately these symptoms can also be common in a number of autoimmune conditions which can make it more difficult to diagnose. Do you know if your consultant intends to do further tests for other conditions following the negative result for scleroderma?

If you require a free lupus information pack which includes details of how it is diagnosed, I would be happy to send you one. Just send me a private message or email paul@lupusuk.org.uk with your name and address.

Jennieja profile image
Jennieja in reply to Paul_Howard

Hello Paul. I have SLE, and ITP. My lupus was found in a routine platelet count. I want even told till 3 years later. Its taken a year to get a referral to the rheumatologist. I would love to know how they detect it. Would you be able to tell me too? Tia

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to Jennieja

Hi Jennieja ,

If you would like to read about how lupus is diagnosed I would recommend that you take a look at our blog article here - lupusuk.org.uk/getting-diag...

hettie01 profile image
hettie01

Hi thank you for your reply,i go to see my consultant on monday so i hope he will recommend further tests,because i do beleave i do have another autoimmune condition. I will contact you after monday then i should know where i go from here!! Thank you

madgirl profile image
madgirl

Dont worry i have PBC and Lupus and 2 other immune illnesses. As well as RS and OA, you find if you have one immune problem you are more than likely to have others. It's "just one of those things", keep positive and keep smiling . find a good doc and find out things to help , right meds, look after your self. good luck xxxx

You may also like...

Confused!

gym. When i have flairs my joints swell. Rheumatologist said he doesn't feel it is lupus but...

Confused! :/

concerned that the symptoms I have had for the last two years could be due to lupus, I started to...

Confused 🤷‍♀️

to touch, just an odd feeling with the swelling. I’m wondering if I could possibly have Lupus. My...

confused

get some of the symptoms I was talking about. in April I was diagnosed with possible lupus. I told...

CONFUSION

around 50 thousand blood tests, blood cultures etc and it was 'confirmed' that I have APLS and not...