I am female, 51 yrs. with ZERO underlying health issues with a daughter now 17 suffering the same symptoms, who desperately needs to be diagnosed and treated proffessionally as soon as possible, but I cannot find a consultant or even a medical department interested in our problem.
Since 7 years old and throughout my life I have suffered the misery of my face, hands and legs swelling. face is swollen in the morning, legs, hands and arm swell throughout the day, I can gain 1-3 kilos in weight daily. The constant swelling and contracting has led to other painful problems ie ingrowing toe and finger nails. I have visited many doctors and had many tests, yet no-one has been able to actually help or make a diagnosis despite prescribing various diuretics. Over the years my symptons have got worse especially in the last 8 years that I have lived in Spain.
Last year we had a Lymphscintigraphy which exposed 'slowing lymphatics', this year we had a LymphMRI. that showed both our lymphatics to be working perfectly however we both have an abnormal amount of fluid / cellulite in our lower legs and in my face, arm and hands despite both of us wearing high compression tights 24/7 as recommended for the last 2 years. I asked our LymphMRI Specialist, Dr Arrive, at the Paris clinic, "If our problems were not related to our Lymphatics and all previous tests ie. liver, heart, thyroid, vascular etc proved negative, what our problem could be? " He said he had no idea other than it appears we have 'leaky capillaries" , some kind of "Idiopathic Oedema'. I asked if he knew of a specialist we could speak with to get actually tested, diagnosed and treated, he did not know of anyone.
I have since viewed information via the internet and can related all our symptoms to this possible diagnosis but cannot find a medical department / specialist in any hospital who can help us.
We are desperate, Can you help us or direct us?