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Not diagnosed yet but getting there

361 Views 4 Replies 4 Participants Last post by  LLM1970

I am new to this site and thought I would ask how long people usually take to be diagnosed.

About in January 2007 I was suffering from horrendous headaches and my GP took blood tests, within 4 days of the blood tests being taken I was hand delivered a letter through my door saying that I had to be at the hospital the following morning to see a rhumetologist I was told that my blood test showed a very high ESR I was placed on steroids and had to go in two weeks later for a biopsy on an artery at the side of my head to test for something. This came back negative and I was sent to a neurologist who said he thought it was migraines. My liver count had come back high and the neurologist suggested that it was more important to get this seen to which I did and after a liver biopsy I was diagnosed with Primary Biliary Cirrhosis (PBC) which is an autoimmune disease this diagnosis was about a year ago.

Since then I have been back to my GP as when I have received a cut, burn and blister it has not healed and has left raised purple scarring with a dry scaling like film over it, in fact old scars have raised I also got what I thought was prickly heat on my arms and face (butterfly rash) about 4 months ago and the rash goes down and leaves purple mark and then raises when the sun is out (not that we get much in Scotland lol). I ask my GP if he thought that it may be something to do with my liver and he said and gave me cream for the itching. On seeing my liver consultant he thought that there could be a link and sent me to a dermatologist as soon as he saw me he said that he thought I may have Lupus and took blood tests I went back a week later to have a biopsy on my rash on my arm but this had gone down and he did not want to take it from my face but has given me his mobile number to call him as soon as the rash on my arm appears again so he can do the biopsy the blood tests had still not come back but I must call him tomorrow for an update.

Sorry that I have gone on a bit but I wondered if anyone had similar symptoms prior to being diagnosed. I am really worried as I have an 8 year old autistic son and have also recently found out that I am expecting again.

Thanks for taking the time to read my post and any comments will be greatly appreciated. xx
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hi LLM1970

Sorry to hear you are not well,i am a newly diagnosed so i cannot help but there is always someone to help you if you want to have a rant.
Hopefully someone more experienced may respond to you but in the meantime congratulations, hope to meet you on chat room one day.
Anyway this is a great site and there is always someone on hand to talk to.
In the meantime i send you lots of hugs.

First of all Congratulations on the coming baby, please don't let your worries spoil your pregnancy. Diagnosis can take a long time but I imagine your pregnancy will get the Doctors more active . There are medications for lupus which are okay in pregnancy. I can appreciate that the situation with your 8 year old can be difficult. Please accept any help you can from family etc. Now is not the time to be Superwoman.

My Children are quite grown up now, but I am sure others who have been pregnant more recently will be in a position to reassure you.
x Lola

Welcome to the forum:welcome:

I am sorry you are unwell. And congratulations on your pregnancy.

Given that you have PBC, and possibly lupus too, it is important that you see a obstetrician with high risk experience as soon as possible. Both if these diseases can influence the pregnancy, so don't delay in asking for a referal.

Can you phone today for the result of the blood tests done by the dermatologist?
Did the rheumatologist you saw consider lupus at the time?
If any of your blood tests come back positive, you should go back to the rheumy for reassesment.
Have you ever had a blood clot in the legs or anywhere else or a miscarriage or stillbirth?

What medications are you on for the PBC?

I agree that being pregnant is a good reason to push for a diagnosis, or at least to keep a close eye on you and do all the appropriate blood tests for lupus. There are two tests which are especially relevent to pregnancy

the SSA antibody, also called Ro
Antiphospholipid antibodies - the anticardiolipins, and lupus anticoagulant.

Keep us updated?

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Thanks everyone

Thank you to all that have taken the time to reply. Just to let you know that I am being seen by the high risk team at the hospital due to my liver condition (they do not know that I am being tested for Lupus yet as saw the dermotologist after going to the high risk team). I have had 2 scans so far and everything is good and am having another on Friday when I will be nearly 15 weeks pregnant, I will have a photo album full before the little one arrives.

The medication I am on for my PBC is that which is prescribed for women who get liver complaints during pregnancy so I can continue taking it and the hospital will keep a close eye on my liver count and increase the dosage if needs be. I am lucky that the GP and Community Midwife have pushed the hospital to see me.

Tried calling my dermatologist today to see if the blood test results are back but have not heard from him yet.

Thanks again and I will keep you all posted on events xx
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