Wondered if anyone had unilateral primary lymphodema ... - LSN
Wondered if anyone had unilateral primary lymphodema with no family history? confirmed by lymphoscintigraphy showing no lymph trunks?
Anyone?
What do you mean by "lymph trunks"? It is not a term I am familiar with?
Think my son pretty much falls into this category, although one leg is affected worse than the other (right leg showed some take up of the dye, left leg the dye just sat in a pool where it had been injected, no take up at all). We have no family history of lymphoedema. I think cellulitis bouts in the left leg made it worse; as a very young child it wasn't particularly noticeable.
Hi do you know what triggered it off? At what age did your son get noticeable swelling?
Thanks for your reply
He has had it from birth; either a malformation or a genetic thing (not a named condition). Strangely in his right foot initially which resolved after 6 months or so, and then his left leg right up to the top of the thigh at about 12 months old.
Lymph trunks I guess are the pathways that show on a lymphoscintigraphy or not as the case may be. I think approx 3 to 5 in calf 2 to 3 in thigh. Mine didn't show on left side.
That sounds like me - although i've never heard of the term lymph trunks
The lymph vessels in both my legs feet are so fine they don't work. Only one leg/foot was swollen for approx 20 years (from age 12). It didn't appear to affect any one else the family but over the years has affected two of my 3 siblings. We have no knowledge of lymphoedema affecting any other relatives past or present.
I am 34 and have no swelling until May Thurner diagnosed in my pregnancy. I am now considering genetic testing for my son. Lymphedema is so little understood I don't know if it's worth it.
Have you asked whether genetic testing exists for lymphoedema? I am not aware it does yet, although research is taking place - as we (me and my 3 siblings - 2 with lymphoedema, one without) have been/are part of it.
I think they can test for certain gene types. I will discuss with prof Mortimer in may at my appointment. If it was triggered by may Thurner will not be worth it if it is certain it is primary then may be
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