Lifetime of misery due to daily Face, Arm, Leg swelling

[Ferguson1]

Hello,

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?

[novembergirl]

Hello, are you in Spain? If you can come to the UK have a look at the Lymphoedema Support Network website, which is a good place to find information.

google.co.uk/#q=lymphoedema...

Professor Peter Mortimer is the leading expert in the UK. He works at St George's Tooting and privately at the royal Marsden Hospital. I believe there's also a good service in Leeds: leedsth.nhs.uk/a-z-of-servi...

Do try the LSN for contacts though because I'm sure there must be others too.

If you need someone in Spain, I hope someone else might be able to advise. Hope you get some useful help soon for you and your daughter.

[Whitesugar]

The Lymphoedema Clinic under Professor Mortimer at St George's Hospital in South London would be the best place to start if you are eligible under the NHS. You have to be referred by an NHS funded Lymphoedema Clinic or a medical consultant. Alternatively patients on this site have reported seeing him privately.

[JMP123]

Hello Ferguson 1,

I have secondary Lymphoedema following breast cancer surgery and treatment 2013-14.

My GP referred me to Professor Peter Mortimer at his Lymphoedema Clinic at The Royal Marsden in Surrey. At that point I had Cellulitis and Lymphoedema.

Subsequently I saw a senior Lymphoedema Nurse at The Royal Marsden Lymphoedema Clinic in Chelsea.

I would advise contacting The Lymphoedema Support Network. The LSN is at lymphoedema.org. You could email/ telephone & find out about Consultants abroad.

I believe that heat is not helpful for Lymphoedema which may explain why it has got worse in Spain. Hope this helps a bit. JMP.

[lovesradio]

I cannot add to anything above but just want to wish you and your daughter every success in finding an appropriate service and specialist to help you both.

[sarsparilla]

I would contact the Royal Marsden privately and speak to Mr Mortimer's practice manager yourself by phone. Knowing how private consultancy works, the professor is best placed to suggest either his fee structure - because fees can sometimes be waived - or to tell you the name of Spain's top specialist or if there is an equivalent expert in Paris.

Very often one consultation done privately provides the evidence base that allows the public health system to take it seriously and to mive forward.

But his private practice secretary manager is the person whose number you need, & who you need to direct your enquiry to. The Royal Narsden id an excellent hospital and I wish you and your daughter every bit of luck in bringing your medical team forward to where they need to be to treat you further.

[Hidden]

Hello and I am very sorry to hear about your struggles.

It is possible that some of your lower limb swelling is due to Lipoedema. The Lipoedema UK site is worth reading:

lipoedema.co.uk

I inherited mine from my Mother's side of the family but my Sister didn't.

Difficult to know what else to advise. I am lucky as I am under the care of St Georges hospital, London which is headed up by Proff Mortimer & Dr Kristiana Gordon.

I did not know I had Lipoedema until I saw The Proff. He had already had a lot written about him above but if you are not in the U K that knowledge isn't much help.

There are other eminent Practitioners in the field in the U K.

Are you the first generation to have this nasty problem by the way ? Just curious, I don't have any ideas !

I wish you all the best.

[Hidden]

Private appointments with Proff M were costing me £ 200 but that is now likely to be higher as I was transferred over to the N H S some 2 years ago.

I feel it had been money well spent.

It is a good idea to ask for guidance from his P A if you are still living outside the U K to see if you can find someone else with his background as suggested by Sarsparilla.

You would still need a referral from a Practitioner to see him privately.

I have contact details if you need them but I expect they are on his private practice website at Parkside Hospital in Wimbledon.

[superlympho]

Sounds horrible. I so very sorry that all I can do is pray and suggest accupuncture. The lymph system is terribly under studied and understood it seems to me. I am having an awful time trying to find treatment. I bet if I were rich I would do some what better.I feel

We have to keep moving forward. I truly hope you find a healer.