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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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Hello All

Postby bradysdad » Fri Jun 16, 2006 10:02 am

Well, where do I begin. My name is Guy and I am new to this forum. I am 40 myrs old and have congenital lymphedema. My symptoms started when I was 7 in my r. leg and then when I was 22 in my l. leg. I have been through all the test the infections the looks, stares and pointing that I am sure you all have been through as well. I have been married to my 2nd wife for just a little ove a year now and god bless her she sees me for the man that I am on the inside not for my fat legs. She gave me the best gift of all last October 14th, my son Brady!! A few days before our wedding I new that something was going on with my right leg. The night after our wedding I was on my way to the hospital and after a few days My Dr. said I had neucrotic tissue in my leg, it had to be dug out after that he told me that I should be on permanent dissability. The past year has been crazy for me as my legs got bigger I was unable to continue to wear my jobst stockings. I went to get measured the other day for some Circ Aid wraps when I looked in the full length mirror I saw how bad my legs were especially my left one. The guy measured my l. leg and at the biggest point it measured 80 cm. wow I am so scared!! I need to get my life back for me and my family. i want to be able to run with my son . I used to play all sports and never let my Le get in my way but now I need help and am hopefully getting the wraps if my insurance will pay for them if not then I will have to go to a clinic that I visited the other day. I will have to be wrapped everery day for about 2 months the theropist figures to get my legs down to normal again. Any how Thats my story and I am glad I found this group. :D
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Postby patoco » Fri Jun 16, 2006 5:55 pm

Super welcome to our family Guy :D

and special congrats one the little one :!: :!: :!: :wink:
This October, I am eagerly awaiting the birth of my first grandchild...gonna be a boy :) :D :) :lol:

Been there with you with the infections and neccrotic tissue. When I was 9 one of th left inguinal nodes turned necrotic during an especially bad spell of cellulitis.

Just wanted to mention a couple things. be sure to check our our Leg Lymphedema section and I would like to extend an invite to our Men with Lymphedema..dozens of us guys there with lymhpedema.


Are you having decontgestive therapy too? What do they say about being able to get the size down?

Lok forward to getting to know you and if there are any questions, pleae don't hesitate to ask.

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Postby silkie » Fri Jun 16, 2006 6:10 pm

Hi Guy

I am glad you found us too

The members here are brilliant so helpful supportive

and i think it is wonderful to talk to other people that know

and understand the frustration we often feel

The wrapping each day gave me a reduction of 8 inches round my ankle in under 2 weeks and other than when i have infections i have kept them stable I wrap my legs every night supports each day and full body massage (thats how my practioner taught me)

The mobility has improved somewhat but i am very slow
I to felt really angry i suppose that i couldnt go out with my grandchildren and kick a ball about and i can't do it now
but rather that thinking i cant do things with them i found things i could

one thing you will be able to do is swim take your son swimming teach him to swim it is so good for us lymphers and walking no matter how slow

i paint for pleasure i have taken the children with me and they take pictures for me so i can paint them later they have actually sketched with me . There are many thing you will share and Ithink the mo0st inportant thing we can do is give our children our time and love
and from the way you have written he will have much of that

Good luck with the theropy watch everything you therapist does learn
and you will soon be wrapping for yourself

any questions no matter how many or how small please ask I found the help i got from my lymph family here was amazing and still is

look forward to hearing from you

let us know how therapy is going

Silksxxxxxxxxxx huggggggggggg for Brady to xxxxxx
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Necrotic Tissue

Postby donsuzbee » Sat Jun 17, 2006 1:09 pm

So now another new word for me - Necrotic tissue. How would I know about it? I have so very much scar tissue in my upper right quadrant. Who diagnoses this?
Susan :roll:
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Postby silkie » Sat Jun 17, 2006 3:26 pm

Hi Susan

I hate these medical terms why can they not explain to us
in plain english.

I am sure Pat can explain it but i THINK it is tissue that

cannot or has difficulty healing .

and i also would love to know who names these things.

Did someone tell you you had this?


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Necrotic tissues

Postby donsuzbee » Sat Jun 17, 2006 5:35 pm

No one has told me I have it, but I have so much scar tissue that I wonder.
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Postby maryceady » Sat Jun 17, 2006 9:58 pm

welcome guy and congratulations on your son! i am here because of my little boy, eamonn, who is three months old. he was recently diagnosed with Milroy's disease -- LE in both of his feet.

i hope that you find the help you need for your legs so that you CAN run with your little guy.

i am fairly new here, too, and it's amazing the help I have already found. i hope it's the same for you.
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