I am dying in disbelief at the lack of patient care due in part by the awful politics that exists in this countries health system. (NHS and Private alike)
I was admitted to my local hospital with acute jaundice and diagnosed with Autoimmune hepatitis 4 years ago, and recently half heartily diagnosed with LUPUS
I was then referred to a Hepatologist at Addenbrooke’s, who doubted the diagnosis because the tests weren’t done in the Addenbrooke’s lab. - I was sent on my way and told that it was post-viral fatigue I was suffering from.
After seeing psychiatrist, psychologist, other specialist, completing a CBT and generally being told it’s all in my head; my health continued to deteriorate.
After several Liver flare ups, unquestionable evidence from a liver biopsy and blood test, my Hepatologist, confirmed my diagnosis as “Chronic Active Autoimmune with Liver disease”. – Hang on that sounds very much like the diagnosis they dismissed several years ago?? Nevertheless, I’ve got a diagnosis now; help should be on the way. WRONG
Another year or so passes and my Hepatologist is still arguing that my symptoms don’t fit with Autoimmune Hepatitis. Something other that Autoimmune Hepatitis must be causing them!
These symptoms are;
o I can't regulate my body temp (cold & hot)
o Constant mouth Ulcers
o Chronic active muscle ache
o Joint arthritis
o Swelling of organs; Liver ?kidney – high pain
o Rash over hands and feet
o Loss of appetite.
o Nauseous & Vomiting
o Chronic Fatigue
o Insomnia
o Dizziness
o Sweats
o Tightness of chest
o Hair loss
o Over sensitivity to sunlight
o Headaches and migraines with vomiting
Addenbrooke’s tested me for Lupus - positive ANA and positive DNA antibodies.
Ok, off to the London Lupus centre then – well guess what they claim?
I do NOT have Lupus – reason behind this stupid decision;
1) I’m a man
2) They did not do the positive ANA DNA tests in their lab. (heard this before??)
3) and.... My rash is in the wrong place; it should be on my face.
Thanks for that; so now I am left with these debilitating symptoms that make my life unbearable, giving me a very painful and poor quality of life.
My GP has stated they have signed over legal responsibility and care of my condition to the Hepatology department at Addenbrooke’s and will NOT deal with my symptoms and are strongly against writing any further referrals.
The Hepatology department at Addenbrooke’s hospital identified positive ANA and positive DNA antibodies tests and raised the question “Is this LUPUS?” and will NOT deal with my symptoms.
My Rheumatologist agreed with the Hepatologist at Addenbrooke’s that it would seem I have "Generalized Autoimmune Lupus with Liver disease being prominent feature” and will NOT deal with my symptoms.
So if my symptoms are not related to Lupus, Liver disease or autoimmune then that leaves me with very little prospect of getting any Answers, Diagnosis, treatment or specialist care for them.
Any expression of disbelief, concern or horror at the comments said to me by GPs, Consultants or Specialists is always met with the same reaction - I don't see what you want me to do about it? HOW ABOUT DO YOUR JOB!!!!!
I have been battling these politics for 4 years now – I GIVE UP
all the symptoms you listed I could have written myself. I would certainly take this further and hgher! Just because you are a man does not mean you can't/don't have lupus and you need some kind of meds to help you live your life a bit better!! Good luck hun and wish you all the best. Please let us know how you get on xxx
Diagnosis based on ANA and symptoms only?
Positive dsdna, then negative and my rheumatologist says I don't have lupus...
LUPUS??????
Lupus or another Autoimmune Disease?
Diagnosed me/cfs 20 yrs ago now think it’s autoimmune after symptoms and positive ana I had done myself. Anyone on here misdiagnosed?
