Due to my ongoing failing health I've had to do my own research as to the pathway of blood test results, symptoms and the progression/knock on effects of having doctors who refuse to help. I have had to be extremely proactive in my own diagnosis, following the path of autoimmune conditions (co-morbid) from:Celiac Disease
Gastritis
Acid reflux
Neurological symptoms
Muscle pain
Joint pain
Oesteoarthritis
Dye eyes
Parotid gland CA
Difficultly swallowing
Rashes
Photosensitivity (UV)
Family history PA
Foot pain
Crawling sensation lower limbs.
Vitiligo
Fatigue (extreme)
Poor sleep
Excessive sweating (face)
Anxiety
I have now had a diagnosis of PBC. This was totally out of her blue as I am a none drinker so never had concerns about my liver, this came to light after I pushed for numerous tests. The ANA test result picked up speckling on my Hep-2. I was not given this test result for over 10 months. It was found by myself whilst going through a pile of results printed out for me by accident by the deputy manager of my primary care centre.
The report stated that the laboratory had no explanation for the speckling result, the term used was the clinical significance is unsure?
It took me about 20 minutes of research to narrow this result down to " this is an autoimmune response" ... And points to one of 4 possible diseases. I fought and fought... I argued and sent evidence, I requested the next step of blood tests, then the next, and then more.... To the point the doctor's were clearly fed up with me contacting them.
Whilst trying to diagnose which autoimmune disorders I have, I am still adamant that I have PA. I ask again for the B12 blood test using the name Holo-TC as I need the active B12 not the overall test which is extremely unreliable. I also asked for Homocysteine and MMA and iron panel. Iron and Homocysteine came back normal but the laboratory did not test my MMA. They put a note on my printout asking why this was requested?
I was so annoyed at this as it's stalling a very important process of elimination by myself, who is trying to show a pathway between my symptoms, family history and blood markers.
I am still working full time and I am finding everyday truly exhausting. My pain level is nearly unbearable. I have cut myself off from family and friends as my health is so debilitating I am horrible to be around. All I do is research my symptoms and present these findings to my GP.
To top it all, the diagnosis of PBC was sent to me via Ask My GP which is basically a messaging service. Good job I'm not easily upset or unhinged getting information of that magnitude in that format. PBC is not something you recover from. It's progressive and will eventually lead to liver failure.
In my quest to unravel my symptoms I discovered that the high dose of Omeprazole they told me to take (14 months 40mg twice daily) could have caused PBC. Along with celiac disease ( wheat intolerance) and B12 (PA), also positive IFAB (1.63AU) and other types of allergies towards foods and environmental factors ect you would think someone would have an epiphany and think "wow" she's not depressed after all.... She really is ill....