Recently Diagnosed!!!

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Recently Diagnosed!!!

Postby mommabirdi » Wed Jun 14, 2006 7:05 pm

Hello Everyone!! I was recently diagnosed as having hereditary lymphedema. I am 42 years old and finally know why my legs have been "swollen" and painful for much of my life. I started seeking medical help about 3 years ago for the pain in my legs. I've been through a variety of tests and all came back ok. Finally, after my legs started "leaking" a doctor diagnosed me with lymphedema. This happened about 2 months ago. FINALLY, a name for what is wrong with my legs!!!! Now the problem is that I live in a rural area and there are no lymphedema therapists or specialists here. I have started seeing a podiatrist who knew right away that I had lymphedema without looking at my medical history. So hopefully he'll be able to help me. I look forward to joining in the posts here and meeting everyone. Thanks for making a place for us to find out about our lymphedema and meeting others with the same problems. I'm sure I'll find a lot of support here. Thanks again,

Mommabirdi (Shelia)
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Postby joanne johnson » Wed Jun 14, 2006 8:31 pm

Hi Sheila,
Welcome! On this site you will learn so much. The info. is very informative and the people are truly wonderful. We all share a commom problem so we all understand the unique challenges and problems we all have.

Don't be a stranger and no question is unimportant so ask away. We share and care and are here for each other!
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Postby silkie » Thu Jun 15, 2006 2:03 am

Hi Sheila


Big Welocme Glad you found us

How are the weeping now? that is the only reason they finally

realised something was wrong with my legs i was 52

Finally to get a name for it i tried for years i remember how good i felt to
finally be believed and have that word lymphedema

I did get help a therapist that taught me how to do the massage wrapping finally measured me for garments

If you can get help even if you have to travel for a short time

to learn how to do the self care will help so much

Joanne is right this is I think the best there is for information
and the support from members always ask no matter how trivial you may think it we ask about everything from what cream to use ,why you legs itch todealig wit infections, and medical insurance

We all exchange our own experiences and information

I know there is lots of information but if you can't find what your looking for just post and there will be members that will jump in and answer

Hugsssssssss

Silksxxxxxxxxxxx
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Postby goddessoflubbock » Fri Jul 07, 2006 6:14 pm

Hi, I am new here, just diagnosed by my family dr and found this site while browsing the web.

Still not real sure of the dx tho, the swelling is pretty much the same in both legs, gets worse as the day goes on, and has come on over the last 8 months. The only "trauma" I've had is a broken left ankle just before all this started. My dr. says it is just because I am heavy, but nothing on the internet says that as a cause, so I'm confused. I'm diabetic too.
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Postby patoco » Fri Jul 07, 2006 6:46 pm

Hi Goddess :D

Welcome to our family :!: :!: :wink:

One time, a doctor actually told someone, if they were skinny they wouldn't have lymphedema...after all, he said....skinny people never get it.

OMG....this doc needs to be flippin burgers not pretending to practice medicine. A great many of us have not been over weight, but....do we ever have lymphedema.

It could be you have a combination of lymphedema and edema caused by thediabetes. Believe it or not, we have members here and some of our other groups that have both.

The best thing to do now, is to do now is to see if you can get an evaluation by a certified lymphedema therapist. They can help sort it out too.

Look forward to getting to know you and please don't hesitate to ask any questions or mention any concerns....that's what we here for.

Pat
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Postby goddessoflubbock » Sat Jul 08, 2006 1:58 pm

Thanks for the reply.

I am trying to find someone close enough to me for an evaluation.

Thanks again.
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Re: Recently Diagnosed!!!

Postby NetterBug » Sun Jul 09, 2006 6:27 pm

Hi Sheila,
Welcome to the group - you joined before me, I joined today ... but I like to say hey to the other newbies. :D

I know you wrote that you were recently diagnosed, what really caught my attention was "hereditary," can you or would you mind sharing with me about that? Do you have family members with Lymphedema, or did the doctor check for a specific gene in your DNA? Also, when your leg "leaks" what exactly is it? It is puss, water, a combination?

I'm just learning about this disease because my Mother has it. My Mom has no leakage right now, just a very swollen right leg and foot from the knee down. She'd had both knees replaced in September and ever since then the swelling would come and go. When she went to the ER one day because she could poke her leg and an indentation stayed for about five minutes they gave her a diuretic and sent her home. After a follow up and studying about different diseases, the conclusion is Lymphedema.

My heart and prayers go out to you, it is my sincere hope that you get some relief soon.

Take care,
Netter Bug

mommabirdi wrote:Hello Everyone!! I was recently diagnosed as having hereditary lymphedema. I am 42 years old and finally know why my legs have been "swollen" and painful for much of my life. I started seeking medical help about 3 years ago for the pain in my legs. I've been through a variety of tests and all came back ok. Finally, after my legs started "leaking" a doctor diagnosed me with lymphedema. This happened about 2 months ago. FINALLY, a name for what is wrong with my legs!!!! Now the problem is that I live in a rural area and there are no lymphedema therapists or specialists here. I have started seeing a podiatrist who knew right away that I had lymphedema without looking at my medical history. So hopefully he'll be able to help me. I look forward to joining in the posts here and meeting everyone. Thanks for making a place for us to find out about our lymphedema and meeting others with the same problems. I'm sure I'll find a lot of support here. Thanks again,

Mommabirdi (Shelia)
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Postby NetterBug » Sun Jul 09, 2006 6:34 pm

Hi Goddessoflubbock and welcome! :D
I'm guessing from your name you live in Texas. I have an Aunt, Uncle and two cousins in Texas.

Have you found a doctor to treat you yet? I noticed there is a list of doctors that the site owner made up, you might want to check it out and find the best one for you.

I sincerely hope you are feeling good today!

Netter Bug

goddessoflubbock wrote:Hi, I am new here, just diagnosed by my family dr and found this site while browsing the web.

Still not real sure of the dx tho, the swelling is pretty much the same in both legs, gets worse as the day goes on, and has come on over the last 8 months. The only "trauma" I've had is a broken left ankle just before all this started. My dr. says it is just because I am heavy, but nothing on the internet says that as a cause, so I'm confused. I'm diabetic too.
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Postby Denise » Mon Jul 10, 2006 1:02 pm

HI Shelia, Welcome.

I know what you mean about, finally having a name. I just turned 45 and for 33 years I have gone with, not enough lymph glands and chronic edema as my problem. Like you I was, IT HAS A NAME!!! :lol: I found out by looking at sites on line. UNREAL! No Dr ever told me much at all. I found a Dr on line and went to CA and learned about the MLD, wrapping etc. It is wonderful having treatment, home care is essential. Like you, I live far away from Treatment Centers and Drs who know what to do, but be sure and do go somewhere to learn the home care. It is life changing. I still have a long way to go but my leg is doing better.

This is a great site, hearing from people who knows what you go through on a daily basis. This site is a Godsend.

Take care,
Denise
 
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Postby goddessoflubbock » Thu Jul 13, 2006 7:39 pm

Hi Netterbug;

Yep, you guessed right! Unfortunately I'm kind of in the boonies out here, so in many cases there's only one doc for specialities, esp. like this one.

Right now I'm suddenly dealing with an unrelated, more urgent issue. Once that is resolved then I will find a doc for this.

Thx!
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Postby angieboo401 » Fri Jul 14, 2006 12:04 pm

Welcome everybody!

Just wanted to say glad you found us! This website has been great for me. Just this year I was diagnosed with lymphedema of my legs.. mine is just in lower legs. I am 42 also and I had been asking my doc.. why is my left leg so much bigger than my right. Oh you just lose weight and it will go away. Weight can cause problems with lymphedema. Things I have found says that weight can crush the lymphatic system and cause problems... of course I went from there to .. Oh I am so stupid.. this is my fault, yada yada yada .. and what did that do? It made me go binge... so that really helped a lot. So... here's the deal... I didn't choose to have an eating disorder.. neither did I choose to have lymphedema. Did my weight cause the lymphedema single handedly .. probably not but at this point who cares. I know what it is now.. I know how to treat it and though I can't get rid of it ... I can take care of myself much better.

One other thing I can say.. I did have a broken ankle on my right leg several years ago and had a cast/surgery .. the whole deal. I firmly believe my right leg is not as big because I got compression back then even though it wasn't on purpose. I just want to scream at docs to get knowledgeable on lymphedema! So many suffer needlessly and it could be controlled so much earlier if only they knew.

Hang in there .. it gets way better then the overwhelmed feeling you get right after diagnosis.
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