My daughter (21) has been unwell with a host of horrible symptoms for the past 6 years - bodywide pain, reduced and varying function in left arm/leg with no neurological explanation, dizziness, extreme fatigue and brain fog, migraines, gut issues etc. She has been diagnosed with Chronic Fatigue, fibromyalgia, Postural orthostatic tachycardia, chronic hypotension, and ehlers-danlos syndrome type III. All of these ft some of her symptoms but not all. Lupus seemed to fit everything, and doctor was surprised when tests came back negative, but she did have positive lupus antecoagulant. Positive again 6 weeks later, but negative 6 weeks after that. She has terrible circulation and always had major problems with canulas, with extreme pain and swelling of the arm. She also gets intermittent bouts of painful swelling, warmth and 'hardening' of her upper arm muscles, associated with some flu-lilke symptoms.
My questions (finally!!) are: could she still have Hughes Syndrome but it somehow not always show up in her tests, or was this just a weird, prolonged viral thing (no other signs of infection or inflammation in bloods)? Also, we have an appointment to see Dr Hughes in September - is it a waste of his time to keep the appointment if she has tested negative? I just feel like we could limp on forever and don't want to pass up the chance of some answers.
Thanks for you time, patience, help, and support,