Primary Leg Lymph?

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Primary Leg Lymph?

Postby bouncedrealitycheck » Sat Sep 16, 2006 12:35 am

Hey all! I just wanted to share some information and ask a few questions. I recently found out through my older sisters (over a YEAR after my diagnosis) that my maternal grandmother had something they used to called "milk leg" and that her legs were just like mine. I looked up the term and it seems that my lymphedema may be primary after all. I've always been a large girl and have been told my legs were swollen due to weight, being on the pill, water retention...you get the idea. When I was finally diagnosed, I was told it was probably due to some form of trama or insect bite. I had a severe case of cellulitis at the time, too. Is there any way to find out for sure if it's primary or secondary or does it really matter in the fight for disability? I also just got off of 6 days of steroids to help with the stasis dermatitis I have. Has anyone else done this and did it help? I'm using Eucerin and two other types of lotions, but I still have the thick, black-purple places on my legs. I was told this will probably never go away. I can live with that, I just want to feel better! I read the forums a lot, so I know you all know what I'm talking about. It helps so much just to know I'm not alone and someone really does understand. Also, I don't know if you all know this, but on the SSA.gov site they added the Cardiovascular System to the list of impairments and it states that "any disorder that affects the proper functioning of the heart or circulatory system (that is, arteries, veins, capillaries and the lymphatic drainage.) Lymphedema doesn't meet the requirements alone, but coupled with everything that goes with it, we now have a better chance to get the help we need. I'm told it will be Feb or March of 2007 before my appeal gets heard, but I have higher hope now. I didn't mean to turn this into a novel, so everyone have a good weekend!!
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Postby patoco » Sat Sep 16, 2006 8:17 am

Hi Ya Reality :)

Wow....milk leg is one of the terms they used to call lymphedema. When I was little, I remember hearing people saying that what was wrong with my grandma.

If that is the case, then I would say, definitely, that you have primary lymphedema.

You could find out through a genetics test, but I don't think it would make any difference on the disability issue. Be encouraged on that though, I'm hearing more and more lymphers are successfully getting disability. It just takes persistance and the correct way of putting together your situation.

The coloration isn't going to go away, sooo many, many of us have that, including myself. The Eucerin is one of the best lotions you can use. I switched to it as well.

Sorry took so long to answer, we had a family emergency that pretty much consumed my time yesterday.

Good to hear from ya....don't be a stranger :wink: :!: :!:

Pat
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Postby silkie » Sat Sep 16, 2006 10:52 am

Hi reality , Hi Pat

Milk leg i have heard the term long ago

you just confirmed my suspisions that i got this from my mum
and grandmother I didnt connect for a long time because they called mum sporrowlegs but her knee upwards were huge i always thought it was to do with the arthritis. But when i learned more of lymph
i began to think possibley

Mum and nan both talked of milk leg/ white leg i thought it was just
a pregnancy thing

Thank you for solving a niggle that has bothered me for long time

hugggggggggggggg

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Postby bouncedrealitycheck » Sat Sep 16, 2006 7:24 pm

Considering I've never even been pregnant, I'm pretty comfortable saying my leg issues aren't because of childbirth... :lol:

Thanks for the quick responses. You guys are just so great and appreciated.
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Milk Leg

Postby gary1955 » Mon Sep 18, 2006 1:43 am

I'm glad someone finally posted something about "milk leg". I was talking to my Dad before he passed away and he told me I had a cousin on my Mom's side of the family who had milk leg. They ended up amputating his leg. I never knew it was the old term for LE. This was back in the fifties I believe. So... even though I was diagnosed as having primary LE, I now have the proof.
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Postby silkie » Mon Sep 18, 2006 12:11 pm

Hiya Gary

It is good to know i feel it to

We both known but there a piece of the jigsaw missing now the pictures complete yea

How you doing Hun?

these old legs are great right now and im decreasing the thighs to

might even get areal dance this christmas and not a wobble

im aiming for the dance

Thats my goal and not a walse either but a shakin me bits and givin it some welly


keep smiling hun

Hugsssssssssss

Silkie xxxxxxxxxxxxxxxx
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Postby gary1955 » Mon Sep 18, 2006 8:48 pm

Hi Silkie... I'm so glad to hear your ready to give it some welly! lol I only have one thing to say.....

Image
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Postby silkie » Tue Sep 19, 2006 1:00 am

HA HA HA HA

Thanks Gary that me on the chair wobblin awya to he music
while im on line very perseptive of you


hugggggggggggggggggggggg

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Postby gottahavesun » Tue Sep 19, 2006 8:27 am

Hey Reality--I was approved first shot for ssdi last December so if you have any questions just let me know. I sent in pictures and what a daily schedule looks like for me, which I think helped.

Silkie--remember if you get to dancing out of your chair we want pictures--great progress on the thighs and I'm happy you have a goal for dancing soon. I have a couple of short term goals and I think that really helps me to stay focused on my management--me and hubby's FIRST week long vacation with NO Kids!!!! the week of Oct 7th. We will be down at the beaches of Avon, NC with our best friends--fishing, eating seafood, playing cards, eating some more...
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Postby silkie » Tue Sep 19, 2006 9:41 am

Hiya Lisa

Im so glad You are getting away with your lovely man

You both deserve a break.

I have to have a goal in all things a time i give myself to complete something just something to aim for.

mine started with the heel liftin off the bed on my own

The weight thanks to Pats advice is so slow to come off but its coming
sometimes i go a month and lose only a pound but im not going back up

The baggie flesh is lookin at me and doing my head in but what the heck its empty baggy skin.

I think its long past the saving to be honest same as the bottom of my legs stretched so much its not got the elasticity any more

I do now understand why people are considering surgery

But i am not going to attept it my health is the most important
it would be a great help, but i would not risk the cost i might have to
pay in damaging more of my lymph It will never be worth that risk

I have a friend that does weight training knows the muscles etc so im hoping to find a really good excercise plan for the areas thathave lymph related problems. He read up on lymph and the does and do nots
and will help devise a routine for those muscles wish me luck

Cant wait for my christmas dance thats going to be something special

and i make sure theres pictures hun

you take care my friend

love
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Postby bouncedrealitycheck » Sun Oct 01, 2006 10:12 pm

Lisa

Thank you so much for that great bit of news! I needed to hear that someone was approved. I'm not giving up without a fight, that's for sure. I found pics of myself 10 years ago and had my sister take pics of me last week--YIKES! I'm also going to have 3-4 people write letters explaining how I've changed in the past few years. I've resolved that it will all come together and I will be approved.

Not sure how it is where you all are, but the heat is back in Missouri. 8)
Hope you're all keeping cool!
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Postby gottahavesun » Mon Oct 02, 2006 10:11 am

Hey Reality-pictures are great--you might want to include pictures of you when you are wrapped and what you have to sleep in at night. Since I have a girdle, 4 reid sleeves and a cpap at night, fan blowing on me I have to take something to knock me out while I sleep and I got my husband to take picture of that as well-lol what a bad picture!!!

The weather here in VA goes up and down but right now it is mid 70s-which I love. I was able to go out on our boat for the day Saturday and we caught a ton of fish. I bought a rod a couple months ago that was easier for me to reel and was so happy I was able to fish for about an hour-the rest of the time I spent relaxing and enjoying seeing my husband and son reel the fish right on it-about a half a cooler worth. I hope your weather cools some so you can enjoy this fall as well

Have a great day!
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Postby joanne johnson » Mon Oct 02, 2006 12:07 pm

Hi Silkie,
How are you doing? I was reading your post concerning baggy skin and had to share my baggy skin story. Last year I was in the hospital with a bad case of shingles. The blisters wrapped around my leg and under my foot so I really couldn't walk too much. From being off my feet the swelling really went down in my legs and I had all these ugly wrinkles and folds in my legs where the skin had been so stretched from the lymph. I was shocked by the appearance of my legs As soon as became more mobile my legs swelled up again. I actually thought they looked better swelled up than all wrinkled up!
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Postby silkie » Tue Oct 03, 2006 1:24 am

Hi Joanne

My legs with wrapping and the supports are doing pretty good
but because of lymph or neglect thru ignorance and non diagnisis
my skin for at least 40 years was not cared for an treated as i know know

As we get older our skin loses elasticity anyway but without the help i now give it my skin is like a balloon thats been blown up to many times
and deflated

I have had some improvement in the skin but seeing it for the first time u would think it very wrinkled my skin looks better full lol
my legs if there hurting and full are so restricted in movement and the time i can be up on my feet is miniutes before the pain increases

so i like mine empty lol (unlike my wine glass)and saggy skin
is preferable to the alternative
I keep pumpimg away at muscular excercises and toning and i thought me anti wrinkle, face lifting, toning, you to can look like Julia roberts face cream might be worth a go on me legs lol

not done much for my face lol i have a permanent smile now you know
if you stop smiling you get jowells along your jaw line
I do these face excercises lollllllllllllllllllllllllllllllllll

I TELL YA GIRLS WHEN ITS TIME FOR IT ALL TO HEAD SOUTH LET IT YOU WILL SAVE YOURSELF A FORTUNE IN PRODUCTS THAT DONT WORK

I still believe in miracles tho lollllllllllllllllllllllllllllllllllll

huggggggggggggg
lovessssssssssss
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Postby Kim » Tue Oct 03, 2006 7:55 pm

"[i]my legs if there hurting and full are so restricted in movement and the time i can be up on my feet is miniutes before the pain increases" [/i]

Silkie,
My legs have been hurting for the last couple of weeks...deep inside and mainly the inside part of the leg from knee up.

MLD doesn't help that at all, neither does exercise, in fact that seems to make it worse. Getting up after sitting for a few minutes, I look like I just got off a horse....sore and stiff. After a bit it eases up.

So what now?? Any suggestions? I was off my feet alot last week because of my back, so keeping my feet up doesn't help either. Is this hurting just the name of the game with LE?

Feeling frustrated,
Kim
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Postby silkie » Tue Oct 03, 2006 11:15 pm

Hi Kim

Am so sorry there hurting so bad hun

I can't honestly say i have had an inner thight problem kim it is usually my outer thigh .

To be honest if i was like that i would be seeing my doctor

1 because every ache and pain we have is not always lymph
and many of us do (me included) think oh something else lymph does
to me.

2 The soreness is it because the legs are rubbing? or infection?
this needs checking to hun

3 if the pain is from the knee up there is not only lymph to concider
could be pressure on your joints even arthritis some kind imflamation

4 If mld is not working (which does most of the time) i would
also be chatting to my therapist to . It is very unusual for MLD
to be of no help in reducing.


I really would need a medical opinion kim I second guest my shoulders
i could have done a lot of damage ignoring it thinking it was just another part of lymph

Go to the doctors hun

Hugsssssssssssssss

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Postby Kim » Wed Oct 04, 2006 12:03 pm

Thanks, Silkie, for your reply.

I will be seeing my therapist today, though from what she has said, my superficial lymph is great all over...it's the really deep stuff that is causing problems, especially in my inner thighs up to the groin area. MLD doesn't help with that. She is able to move the deep, but I can't.

Seeing a dr...yes, that would probably be a good idea, although I have very little faith in the drs here. My experience in the last several years doesn't lend itself to depending on or trusting them.

I can't imagine that i've got an infection....no redness, itching, fever, etc. However, this is girl talk guys, would having a bacterial vaginal infection cause anything to this extent? I've been wondering if I have something like that...some odd signs that i've never had before say with a yeast infection.

But since i'll be seeing my therapist today, that will be a good place to start.

Thanks again,
Have a fabulous day, dawling! :lol:
Kim :)
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