HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil

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Postby angel » Mon Jan 15, 2007 8:58 am

hello-me again I'm afraid-another question
Fibrosis-I still will have it according to prof. Mortimer but he says that i don't have pure le but a syndrome so does that mean I'm not a risk from permenant fibrosis? If I do not get mld I am putting myseef at risk in the same way as I would be if I had pure Le?
Sorry to keep harassing you all
all thoughts welcome!
:lol: :lol: :lol:
Posts: 77
Joined: Fri Dec 29, 2006 8:15 am
Location: Scotland

Postby mama » Mon Jan 15, 2007 7:50 pm

Ooh, fibrosis. Can't say from personal experience how it feels from the inside but I can feel it from the outside as I do my hubby's MLD. One of our regrets is letting certain areas go without massage for too long and letting fibrosis set in. My thoughts are that even massaging an area to improve circulation would keep it soft.

I hope you are able to get an answer soon on the name of your condition. I remember finding out what Josh had and being so excitied that it had a name. I agree with Silkie that we felt released. You figure once a disease or condition has a name, that must mean that it has a cure or treatment as well. Why haven't doctors come up with something yet for this *#@$ LE??? :!:

So glad we can all vent here. :?

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Joined: Wed Jun 28, 2006 8:50 am
Location: Rochester NY

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