Primary care. What a waste of precious time. My daughter remains undiagnosed since the age of 6. At 6 she had symptoms of a MILD? "auto immune inflammatory disease" they said at Great Ormond. I begged the GP to send her as he wouldn't initially. Great Ormond stabilised her on 3 months worth of broad anti biotics (as they said it had an anti inflammatory component). She went into remission but it's back with dysphagia (over 25% of lupus patient suffer from dysphagia?) and 72% of these patients suffer from dysphagia because of oesophageal muscle motility problems. Today after the endoscopy they said they couldn't see anything and it seems like motility. More concerning is that my daughter said she had slight problems swallowing for the last few years but thought it was normal, so never mentioned it to me. Not true remission? Jan 18 she had a chest infection and it got worse with associated breathing issues relating to the dysphagia. Since 30% of all patients are never diagnosed with anything in the NHS this explains what happened next. We went from respiratory consultant to ENT (brilliant ENT then said it's dysphagia) to Gastro (15 months later and we had the endoscopy today). GP and paediatrician said - It's in your head, some things just cannot be diagnosed, sorry it's unexplained symptoms see a homeopath!.To make matters worse she is ANA negative. Up to 10% of lupus patients are ANA negative? You don't look ill and all this coming from primary care. As a mom I am exhausted. My daughter has been through hell and is seeing a psychologist.
Everyone played ignorant tag so I decided to contact a published author (rheumatology) by email as I thought he would be an independent thinker. He said wait a minute the livedo reticularis in her hands are normally associated with a sub set of lupus and told me to look at the diagnostic criteria. There are 11 internationally recognised symptoms? If you have had 4 of them at any time since becoming ill a diagnosis is made and positive ANA is not a pre-requisite? She has had 5 symptoms so she will be seeing a lupus specialist privately soon (associated with the lupus paed centre of excellence in Liverpool).
We have come this far despite primary care. They have actually just placed obstacles in our way. Better off going to a witch doctor for a serum? So much ignorance in the medical community. Everything I have learnt, I have learnt by reading and with the help of kind published authors and the ENT. Primary care have been no help at all.
I feel alone in this as a parent to be honest and I am glad I found this forum.
2)Anyone else with dysphagia and oesophageal motility issues? I'm not sure what we are dealing with. They only mentioned motility today