Need to know what our family has

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Need to know what our family has

Postby woodturner » Sun Jul 27, 2008 12:40 am

My family has inherited something that I am told is not primary lymphedema. It seems to have all the symptoms of lymphedema. We can go back to my great grandfather who had swollen legs. His first born daughter, my grandmother, had swollen legs beginning in her fifties. She had a younger sister who never experienced any swelling anywhere. My grandmother's first born male, my father, had swollen legs beginning in his fifties. He had a younger brother and sister who never experienced any swelling anywhere. My grandmother's legs went down in the nursing home by taking dirutes. She lived to be 97 years old. My dad is 85 and having a hard time with his swelling in his legs and now after compression, swelling all over. I am my father's first born female and am 60 years old. I have a younger sister who never had swollen anything. My feet and ankles are all that swells now, but know it will move up my legs and get worse as I age. I would love to know what we have since it isn't primary. Is it our veins? How do we find out what we have? My dad's family doctor just sends him to lymphedema therapy, but compression just pushes it to other parts of his body, his arms and face. He can't seem to rid the swelling from his body. He has all the symptoms of stage 3 lymphedema, but is it something else? Any information and help would be greatly appreciated.
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Re: Need to know what our family has

Postby patoco » Sun Jul 27, 2008 6:36 am

Hi Woodturner :)

Super welcome to our family :!:

I guess my question to the doctors would be if it isn't lymphedema, then what is it and why is it NOT lymphedema.

Are there any other symptoms or problems that go with the swelling?

Looking forward to hearing back from you!!

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Re: Need to know what our family has

Postby OzClaire » Tue Sep 09, 2008 11:39 pm

Hi, I agree with Pat's reply but you might like to develop questions for the doctor's from the following:

Milroy's Disease, seems to follow the inheritence pattern you describe and it is often not primary. In fact, Milroy's disease can be latent until there is some injury to trigger it. For example, a blood clot which causes lympodema swelling but then the swelling doesn't go away. Removal of tonsils and onset of lymphodema. Broken bones, injuries e.g. toe nail torn off etc etc all of which in the normal course of events cause mild lymph swelling but with "normal" people the swelling goes away fairly quickly. In those with Milroy's the swelling remains and will over time get worse because of sub-clinical (ie not obvious) and clinical infections.

In our family we can trace Milroy's back 5 generations and in no case has a male passed it to a male. Male to female, and female to male is common. We can trace the trigger events in 2 possibily 3 generations. My sons:
    one had osteomyelitis in his big toe at about age 10, swelling remained after infection cleared but later infection from lacerations trigger major swelling and he now has chronic swelling in that leg).
    another torn off his toe nail one one foot and broke his ankle on the other -- now has swelling in both legs
    I developed swelling at age 5 after removal of tonsils
    my sister developed swelling in her 30s after getting a blot clot now has it in both legs. This sister has no children
    my other sister is showing the yellow nail part of "disease" but has no swelling because of no trigger event. Likewise her one sons
    my brother does not have the "disease"
    my father's was triggered by malaria I believe during the 2nd World War
    my grandmother & one her sisters both had the "disease" don't know the trigger here. One sister & 3 brothers did not show symptoms of "disease"

Hope this helps, good thoughts & wishes coming your way. :D :arrow:
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Re: Need to know what our family has

Postby Wokkel » Wed Aug 12, 2009 7:13 pm

Ive read everywhere that milroy's IS primary lymphedema. its caused by (in my case) lack of lymphvessels and some poorly working lymphnodes.its right that an injury or even a musquito bite can trigger it to show itself but i believe if you have primary its unavoidable for it to come out sooner or later.
it has a different name than milroys if it starts at later age but if you're a young child and it starts its called milroy's as far as i know. my mother has it, i have lymph since i was 4 it started, my mother's lymphedema also started at age of 5. my brother's started when he was in his early 20's. two of my mother's sisters got it at later age too. we dont know further back if anyone has had it in the family, not that we know so far, and so far my aunts children dont have lymphedema. i think its a certain combination of genes, because i believe it can skip generation(s). and it seemed to have started wtih my mother's generation in this family

Your story certainly sounds like lymphedema, i would recommend getting a 2nd (and maybe 3rd) opinion by different doctors.

Take care

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