help please

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help please

Postby juliebean » Fri Oct 03, 2008 3:00 pm

`hi does anyone have, know about or heard of diffuse systemic lymphangiomatosis and, or plural lymphangiomatosis? their very hard to find anything on i've found very little and don't understand much of what i have found. i'm told by my old pediatrican that i have both i also have congenital lymphedema, i've had these my whole life i'm now 28 and starting to have more health problems. my mother was young when she had me and didn't really tell me these things and now she dosent remember anything well except for the lymphedema. so she's not much help. i need to know about the other 2 things and what i could expect i know it's different for everyone but whats the usual outcome? please if anyone knows anything about the first 2 conditions above send me a email or a reply or a yim or something . i feel like i'm going crazy here lol.
thanks to all and GOD bless,
julie roberts

e-mail ju_bean1@yahoo.com
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Re: help please

Postby tkincheloe » Tue Oct 07, 2008 8:42 pm

Hi Julie,

Lymphangiomatosis is a type of angiodysplasia -- a congenital defect or malformation of blood vascular and/or associated lymph systems. This defect is generally present at birth although some versions may occur shortly after birth. Among some of the more common names or syndromes: Klippel-Trenaunay syndrome, Mafucci syndrome, Gorham syndrome, Proteus syndrome, Weber syndrome, von Willebrand syndrome, and Kasabach Merritt syndrome.

Unfortunately there isn't a lot of information available in the lymphedema world but more information may be available through pediatric literature.

If you know which of these syndromes you have, I can provide a little bit more information in layman terms that you can understand. If you are not sure of which syndrome you may have, perhaps you can provide some symptoms including the presence of port-wine stains. Port-wine stains, for example, can indicate either the Kippel-Trenaunay syndrome or the Weber syndrome.

Tom Kincheloe, OTRL, CLT
Certified Lymphedema Therapist and Senior Moderator
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Re: help please

Postby juliebean » Wed Oct 08, 2008 10:04 pm

hi Tom and thanks for answering my post I'm not sure what syndrome i have my mom never talked about my lymphangiomatosis only my lymphedema it was my old pediatrician who told me recently that i have diffuse systemic lymphangiomatosis and pulmonary lymphangiomatosis. i didn't even know what a port-wine stain was so i googled it and yes i think i do have it theres a patch on my chest and my belly, my left arm, and leg.it's like a very light reddish brown color i've had it as long as i can remember and always wondered what it was. so you say this narrows down the syndrome field a little? so which syndromes is this a symptom of? well i guess that's all the questions i have for now any info you can give me is very helpful. i'm 28 years old and feel like i still don't know exactly what's wrong with me and when doctors ask i would love to be able to tell them instead of just sitting there going :oops: um i'm not really sure. well thanks again for answering and also for listening! :)

thanks and god bless,
julie
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Re: help please

Postby tkincheloe » Fri Oct 10, 2008 6:40 am

Hi Julie,

Could you be more specific about where your lymphedema is located? Leg(s), arm(s), neck, face, etc.?

I'll have more answers for you this evening and help you work out a plan for dealing with this malady beyond what your doctors are doing.

Confidential reply: I have a copy of your emails to Bonnie.

Tom
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Re: help please

Postby juliebean » Thu Oct 23, 2008 11:02 pm

hi tom thanks for the reply, sorry i haven't replyed back in a long time i'm just now checking the forum ive been in and out of the hospital and had lots of appointments lately but i'm home now so here goes my lymphedema is in my left arm, left hand and fingers, left side, left leg, left foot, abdomen and my face like under my chin i used to just have swelling on the left side only , left arm, hand, leg, and foot but when i had my son by c-section in 2001 my abdomen never did go back flat like it was before i got pregnant instead i look like i'm 7 or 8 months pregnant again so the swelling in my abdomen and under my chin isn't congenital like all the swelling on the left side im just guessing that there now swollen because i now have lymphedema in these places too, and the doctor i do see says i'm probably right. i also have fluid around my heart in the sac and i have always had some fluid there they just think there might be more now and i have some fluid around the right lung the left lung is small and only partly functional also has some fluid and a benign tumor in or around the left lung. any help you can give is great i think my disease is getting worse kinda quickly and i'm kinda scared and most doctors have never seen this kind of stuff so they dont really do much for me. well anyway thank you very much for trying to help me. i look forward to hearing from you soon.

thanks so much,

julie roberts
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