Primary Lymphedema

[kelryan]

Primary Lymphedema'

Hi I have primary lymphedema/angeodema and crones, I am 65ys old, I was born with lymphedema it was diagnosed in my 30's, the pain is constant, I live in Australia.

The bandaging doesn't work for me because I have it from my head to the toe. this can affect my eyes' and spine, I have trouble with my arms no strength at the moment one leg is numb and at times feels water running down, the other leg swells and the foot is so painful I have trouble waking, My medication steroids, 4000ml D a day, Zydol For the Pain. Ketoprofen. is there any one that can help me.

[Lynora]

Not sure what sort of advice I can offer, as you are so far away!

Do you get treatment like MLD? I understand the limitations of options in Australia - I have friends there who have to take flights across the continent for treatment.

Have you heard of Professor Neil Piller, based at Flinders Uni in Adelaide - he may be able to assess you and give appropriate suggestions for your symptom management.

[CCT67]

So sorry to hear of your ill health and pain. Have you tried Manual Lymphatic Drainage/MLD? I also have primary LE (bilateral lower, trunk and arms) and find 1-2 times weekly MLD makes a huge difference in pain managemt and functioning. It's a very light touch technique (not massage) which effectively promotes lymph drainage in a broken lymphatic system.

Have you found Ketoprofin helpful? I've stayed away from it as it has very negative/unpleasant side effects. I'm hoping the current clinical trials of Ubenimex/Bestatin (in US, Australia and soon in the UK) proves to be a much better drug treatment for LE. It's related to Ketoprofin with none of the negative side effects.

[Mary-intussuception]

Sorry feel unable to help - but you mention bandaging - are there no Compression garments over there? Have you looked at any on line ?

[Hidden]

I also have primary lymphedema. It is worst in my legs but I now have it in my arms as well. I live in the United States, Colorado. I am 41 and was diagnosed about 15 years ago. I have been using a Flexitouch pump for the last several years and I wear custom made compression garments. Try researching to see if you have a certified custom fitter within a reasonable distance from you. I have also recently begun researching to see if I am a candidate for microsurgery. It makes me hopeful because it sounds like they can reroute lymph drainage through functioning vessels and lymph nodes. I have found two locations in the United States, at least one location in South Wales in the UK and sites that have mentioned this services in the Netherlands and Japan.

[Hippopotamus]

Hi Kel — I know this is a very old message, but I thought I'd check in and see how you were doing? I was diagnosed with primary lymphoedema a couple of years ago (after many years of chronic bilateral swelling in my feet and lower legs) and I live in Brisbane. Happy to share notes sometime