Primary Lymphoedema

[Dylan674]

Hi has anyone got primary Lymphoedema at the age of 43? I've had it for 20 years with no known reason why it started.

[AnneBury]

It showed up when I was 11 in my right leg and aged 30 in my left leg. I was told by a leading lymphoedema specialist that I would have been born with faulty lymphatic vessels. The onset of puberty meant one leg couldn't cope any more. The other one probably gave up after a lymph clot (ie it was going to pack up & just needed a trigger). My understanding for primary lymphoedema is that there are 3 age ranges when swelling starts: birth or puberty or in your 40s. My brother was about 15 when swelling started but my sister was actually in her 20s.

[Dylan674 in reply to AnneBury]

I was mid twenties which is a little strange.

[Anne16 in reply to Dylan674]

I was born with it. Had swelling in both ankles from a very early age but over years just got progressively worse in both legs.

[beelymph in reply to AnneBury]

So does that mean it is hereditary too? You mentioned your brother and sister both have lymphedema. For me, early manifestations were in my teens and worsened when I gained weight, mostly due to 3 pregnancies. It further worsened when I had cellulitis on the affected leg and it left an unsightly keloid scar. My sister also has lymphedema on her left leg which manifested, I think when she was already in her 40s.

[AnneBury in reply to beelymph]

I think for some it is hereditary. People do say they know aunts, their mother, grandmother etc that had swelling (usually women and legs). It seems for many, though, primary lymphoedema/ faulty lymphatic at birth is something they were born with as many things that people can be born with that are not 100 "normal" - the side effects of lymphoedema then kicking in at any age.

In our family we assume it is hereditary as 3 ( 1 male, 2 female & legs) out of 4 of my parents children have it but we have no idea where it has come from.

[Lynora]

Have you been referred to a Lymphoedema clinic? The staff will be able to give you advice and information.

Primary lymphoedema can occur and any time, at any age, in some one with a faulty lymphatic system. It is more usual to develop in one lower limb, but can, as with AnneBury, develop in the other lower limb at another time. It rarely develops in upper limbs (but can - just rare).

[Dylan674 in reply to Lynora]

Yes I'm under the care of a good Lymphoedema clinic thanks.

[Kelmisty]

Mine appeared 6 years ago after my wedding, when I was 30.

Turns out I have an internal birthmark and following an infection the remainder of my lymph nodes in my left side of my groin gave up working!

It's pretty common for primary to appear at any age, according to professor Mortimer

[Dylan674 in reply to Kelmisty]

Thanks

[Ldd1412]

Mine showed up in August last year when I was 37 following an infected cat scratch in my left leg.

[Niktcx]

Mine started in my late 30s in my left leg. If you can afford it go and see professor Furniss at Oxford Lymphodema clinic, he may be able to do a by pass surgery. I think I left it too late and regret that now. I also use a compression pump( pulse press 12 pro) which really helps to manage the swelling. Swimming is very good at moving lymph fluid too. Manual lymphatic drainage massage helps a lot too, find yourself one who is trained to manage lymphodema.

Good luck.

[CCT67]

I have primary bilateral lower extremity LE (both feet and full legs). I had been extremely athletic all my life. The LE morphed out of no where (or so it seemed) age 44 with early symptoms/swelling that came and went (usually in hot weather and flying long haul). The symptoms notably worsened over a five month period at the end of 2014-early 2015 when my weekly cycling mileage increased to 80-150 miles. The swelling came and never left, and then my right leg blew up even more. I was age 48. My right leg is still more severe than left - I have no lymphatic uptake at all in my right, while my left has mediocre lymphatic uptake. This is down to genetic faults according to Prof Mortimers team at St George's Hospital, London)

The Lymphoscintigraphy and ICG Lymphology scans in 2015 and 2016 showed my right leg has no lymph vessels, and has undeveloped lymph valves and nodes that aren't working either. In my left the lymph vessels are 'abnormal' and therefore lymph can't flow properly. It is still a mystery how I went for so many decades using my legs for many types of regular weekly athletics without any problems and then bam everything blew up without any known trauma to my lymphatics. The specialists can't give a definitive answer but it seems this happens to many primary Lymphies

It's a mysterious and horrible disease but I have learned to live with it and adjusted to much I can no longer due as the pain is so intense

I have MLD therapy twice weekly and use a deep oscillation machine for MLD daily, this keeps me mobile and in work. If you haven't tried MLD i highly recommend it. You can look on MLDUK website for qualitied MLD therapists by postcode

Take care

[cinthiaalbu in reply to CCT67]

Mine start (I think) in my early 40's. Just swelling in my right ankle - on and off.

One vascular surgeon said it was my vein and did a laser endovenous surgery. That didn't help - if anything, made it worse. The next vascular surgeon said it looks like lymphedema and recommended going to a clinic. I did this, but still wasn't convinced since I had no family history. Over a span of 10 years and 5 doctors, I have had mixed opinions. As of Nov 2016 my swelling has progressed from just my ankles to my entire foot/toes all the way up my thigh. I no longer jog or go on my cycle, though I walk daily. What kind of exercise do you do?

[Dylan674 in reply to cinthiaalbu]

I tend to walk a fair bit and cycle when I can. Swimming is also very good but I don't get to do that often.

[Cooking-Queen20]

Hi Dylan674, my brother and I were born with primary. We had no idea how that happened. One summer my father developed it in his 40s like you. Essentially its genetic, so someone in your family must have carried the strand without anyone ever knowing. Sometimes it comes out triggered by a bite, stress or who knows.

Have you ever done a genetics test to see which mutation you have?