Guestbook Number 9

Numbers 201 - 225

July 16 - October 20, 2002

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225. Linda lkingle@gct21.net
Portland, OR , USA
October 20, 2002 at 03:42

I am 50 and have primary L/E and my heart goes out to all of you who suffer with this disease. I have it in both legs---the swelling never decreases or increases but the pain fluctuates. I have had massage therapy that did help some. I have not worn compression stocking because I cannot seem to get them to fit properly.

For me the most difficult thing is the unkindness of strangers who do not know about this disease and come up to me and ask, "what is wrong with your legs? " I never know what to say. I have cried tears but then realize there are many people much worse off than I.

For all of you who feel alone---you are not. Feel free to send me an E-mail.

224. MARJORIE mgarridoc@vtr.net
Iquique , Chile
October 13, 2002 at 20:51

Hi: My name is Marjorie and I'm 29. I was diagnosed with Cervical Cancer stage IIB and I had radiotheraphy and chemotherapy last year. I started having problems with my left leg in July and in August my doctor told me it was a lymphedema. In that moment I had already discovered it in internet and I was very aware of the fact that it was because of the radiation (because I didn't have any lymph nodes removed). Unfortunately,the doctot didn't agree and he thought my cancer had spread to the lymph nodes, so he sent me to have more chemo. Once in the clinic, the chemotherapist told me she wanted to be really sure so she suggested some exams to be done. Result: No cancer in the lymph nodes and my lymphedema was as I thought it was, a consequence of the radiation. I was given some duirectics and nothing else. Now, I'm having some massages, but only because I learnt about them in internet. Here in my country NO ONE KNOWS A WORD ABOUT LYMPHEDEMA!!!! I've been treating myself!!! Doctors have no idea how to treat it and radiotherapists don't accept the fact their treament causes this! Thank you for this site, it's the best I've seen. Marjorie

223. Jean jlg@charterproperties.com
Charlotte, NC , USA
October 3, 2002 at 22:15

This is the best lymphedema site I've been to - and I've been all over the internet trying to find out if more research has been/will be done on the subject. And all of you are right, nothing is being done. I'm writing so I can share my experiences with all of you because I feel that I'm probably doing as well as anyone under the circumstances.

I have had lymphedema for five years in my left leg following cancer surgery to remove a two pound tumor. I had to wear a drain for six weeks and after it was removed, my surgeon suggested I see a specialist in treating the swelling in my leg. The specialist signed me up for the manual lymph drainage process which continued for eight weeks, every day of the week except weekends. The tech taught me how to wrap my leg with the bandages, and I continued doing that every day for well over a year. After about four months, I was allowed to wear the compression stockings at work, but as soon as I came home, I had to bandage and sleep with the bandages.

I "graduated" totally to the compression stockings after over a year in bandages. My own routine is as soon as I get out of bed, I put on a 30# thigh-high stocking on my leg, then I go make coffee. I take it off only to shower. Good lotion on your leg is a must - in the winter months, I use baby oil - really helps with the dry skin. Then I put on 40# compression panty hose. I was still having a little more swelling in my ankle than I wanted so suggested to my surgeon that maybe I should wear another stocking on top of the panty hose - he thought it was a good idea. For the last two months, I have been wearing the 40# compression with a 30# thigh-high - it's a lot of material and it's very hot in the summer, but well worth it! I do not take the stockings off until bed time and I also sleep with a small pillow under my leg.

I also keep a step stool under my desk at work and keep my leg elevated on it. If I am a passenger in a car, I insist I get the front seat, remove my shoes and put my foot on the affected leg on the dash. I do not take long trips with me driving at this really bothers me and the pain is not worth it. Short trips are okay, but I do keep my leg moving - little foot exercises, a little of the self massage - every little thing you can do helps.

Humidity is not our friend. I use the a/c every day in my car and house - except of course when it's really cold outside. Keeping the air dry is a must. I don't visit friends at their house if I know it will be hot and humid in their place. Have them come see you and give them a sweater. Winter weather is no problem as the humidity is very low then.

One note about having radiation that I never thought about and it was never mentioned by anyone - radiation weakens bones! If I had it to do over again, I would not have had the radiation treatment as it only improved my chances of recurrence by 7%. I was treated from my knee to my groin area (also the length of my incision) for eight weeks. Not a pleasant treatment to undergo - my skin was literally burned and started "weaping" liquid and I had to discontinue the treatment for two weeks in order to heal - could not even wear undies during this time - it hurt too bad. Anyway, the point I'm trying to make is that two years after the radiation, I broke my bone in the affected leg and it was due to my bones in that leg being weakened from the radiation. So I now have three titanium pins that are the size of a writing pen in that leg. So if you haven't been treated with radiation and are contemplating doing so, play 20 questions with your doctor to find out ALL side effects - long term and short term.

Also search the web for compression stockings. I order mine and save $30 a pair - sometimes more if there is a sale. I also order rubber gloves off the internet. To get the odor out of a new pair, put them in a plastic bag with the fingers up toward the closed end of the bag. Use a clothespin to secure them but do not seal the bag and hang them outside (open end of the bag down to keep rain out)for several days. This will eliminate nearly all of the smell.

I know this is lengthy, but I did want to share with all of you what I am doing to ease my discomfort and appearance as it IS WORKING for me. Sure, if I stand for a long period (30 minutes) my leg starts hurting and swelling - so I don't stand for 30 minutes. I do attend functions that sometimes require lots of walking, etc. so the next day I plan on taking it easy and keep my leg elevated more than usual. I started wearing long dresses and slacks to "hide" the thick stockings - it makes me feel better. But each night when I take my stockings off and crawl into bed, you cannot tell which leg is the one affected with lymphedema! And that makes me feel like maybe I am doing something right. It takes time and patience and you have to stick with it - you can't do all this one day and skip the next - it won't work! But if you do like I have been doing, I can guarantee you will see and feel a tremendous difference in your affected limb.

Best of luck to each of you and I hope my suggestions help.

222. Kathleen Smith smith@codem.com
September 25, 2002 at 14:05

Wow, there are a lot of people out there that are like me. Who woulda thought. Lymphedema, from what I have read hits 1 out of 10,000 people, mostly female. I don't know how many people are actually going to read this; however, through my ramblings I may say something useful. I've been scoping the internet for the last couple of years researching our disability. I have congenital lymphedema. This means by definition that I was born with it and that it is not hereditary. There are a couple of things that cause le. One is being born with too few lymph vessels, the other is the lymph vessels one has aren't working correctly if at all.

I was diagnosed at 3 or 4 months old by our family physician. I am almost 38 years old now. In the last 10 years or so, my legs have hurt to the point I couldn't walk, sometimes they would go completely numb on me. This was my wake up call to research exactly what I have and not to just discuss it with mommy anymore.

Like I said, I have congenital le. From what my mom has always told me, it is only in my left leg (knee to toes), but something is wrong with my right leg as well, nobody is sure what. Growing up I had to wear boys shoes because of the width (EE). All shoes had to be tie-ups, still do. I went for a brief period in my twenties when I could wear heels and nice dress shoes. The period lasted approx 4 years. It was a real nice 4 years. Growing up, I received no treatments for my le. From the reading here, a lot of you have it much worse than I. After all those years being called unique and special, I never thought there would be others, and worse at that. I know what I go through, so I truly sympathize with you all.

The extreme pain doesn't come as often now, I think it had to do with my body changing; however, since then I have brownish-red discoloration around my ankles and a large patch of it on my right foot. Depending on temperature and activity, depends on how painful is it. It feels as if someone is pressing their heel into my foot. Not comfortable at all. Anyway, I have been to several specialists in the last 8 years. Two venous specialists, a neuro-muscular surgeon, 2 dermatologists, podiatrist, and a chiropractor. The first venous specialist looked at my legs and said "there is no way of knowing this is lymphedema without testing for it." With all of the tests he did, none were for le; however, he diagnosed 2 varicose veins and gave me a prescription for compression hose. The last venous specialist explained everything to me that my mom told me and informed me that I would find more information regarding le on the internet than from a doctor. Isn't this a wonderful thing to have! Some useful information he gave me was that the compression hose need to be worn everyday and replaced every 6-9 months. As the limb swells, one normally puts it up to drain. After a time, the limb may not drain. When this happens, a good sign is when the pitting lasts awhile, the tissue can become Fibrotic (I think is the word). The tissue becomes leathery and thickens and will not go down anymore. The compression stockings or socks keep this from happening. They need to have compression of 30-40, anything lower won't work. And as far as I have found they can only be purchased at medical supplies merchants, no place like Wal-Mart or Rite Aid. Other comment from the md; cannot perform any surgeries on my legs, it could make the le worse. Blood tests and biopsies should be minimal, and he would have expected the discoloration on my left foot because of the le, but since it's on the right, he has no clue what it could be.

I am still looking for a physician, preferrably in New England for a proper diagnosis and treatment, so I know what and where it is and not have to depend on 37 year old medical records that I can't get. There is just so much to say about le, it's difficult not to ramble. I know I have problems with both legs and from what I have read here, it can spread? I was told by a physician that it couldn't.

I found this on a website regarding le. It's a test to help diagnose our disease.

How is congenital lymphedema diagnosed in a child? A: First, our medical staff takes your child's medical history and performs a physical exam. Depending on the results, the staff may schedule your child for a lymphoscintigraphy, an imaging test that allows physicians to view your child's lymphatic vessels. During a lymphoscintigraphy, a radiologist will inject a small amount of a radioactive tracer in your child's foot or hand, then use a special camera to view your child's lymphatic vessels. The radiologist can then make an accurate diagnosis, classifying your child's lymphedema by type: hyperplasia, hypoplasia, or absence of lymphatics. In some cases, the medical staff may order additional X-rays and imaging tests for further clarification.

Last bit of information: limbs with le can become infected extremely easy, so be careful. I was instructed not to shave my legs, ever. I have been told that I could bleed to death if I am not real careful. Diuretics are suggested on some websites, don't waste your time or money. They do more hurt than good and the good is very temporary. Low to no salt and caffeine is healthier and more effective. For your own sanity, you may want to measure your affected limbs every so often to have a record of changes, especially when using drainage treatments (where do you think the fluid goes?).

Best of luck to you all. It's feels so good to be able to finally talk about our disease with people who understand.

Kathleen,
Yes, there are a lot of people with lymphedema and hardly anyone of them gets good care. When they manage to get good treatment, the insurance doesn't want to pay.
Most people never hear of lymphedema until they get it. Someone here (not having lymphedema) suggested that we lymphedema patients, shouldn't moan so much and stop eating so much ice cream.
You say congenital lymphedema is not hereditary. I think congenital lymphedema ìs hereditary. It is something in the genes. Some of your family members may have it too.
You write:"There are a couple of things that cause le. One is being born with too few lymph vessels, the other is the lymph vessels one has aren't working correctly if at all." Your lymph nodes having been taken away during a cancer operation is another cause. The lymph fluid cannot get away anymore and your limb grows bigger and bigger, filling with excess fluid. There are many other causes.
Yvonne Janssen, webmaster.

Yvonne,
I think I am being misunderstood with a couple of things though. Primary lymphedema has 2 types that I am aware of, congenital (born with it) and some people refer to the type as Milroys which develops or awakens usually in the teenage years. I have congenital; however, mine is not hereditary unlike most cases of congenital. My mother experienced a difficult pregnancy with me and was prescribed certain medications back then that later on were determined to hurt the fetus and the mother. According to what my mother has told me, the doctors believed that the medications were the cause of my lymphedema. Between the gene tests on my parents and knowledge of family history, the medications was deemed guilty. Secondary lymphedema is caused be some types of surgery.
Kathleen

Kathleen,
I didn't know you could get it as a baby from your mother taking pills during pregnancy. Still I think, that your le is not congenital. Or have your genes been changed because of this? In that case you would be a mutation. Then indeed your le ìs congenital and this means your offspring can have le too, because they will also have weak lymph systems. But somehow I don't think genes can be changed that easily.
Yvonne

221. Maria Panarotto Nana80@citlink.net
Bloomingburg, New York , united States
September 22, 2002 at 21:25

I have had this condition for the past 50 years. Legs swelling. But it has gotten progressively worse. I have some relief in the winter months ,by wearing compression pantyhose. It is getting harder for me to wear them because it requires a bit of strength to pull them on. In the summer its impossible to wear them especially if it is humid. Seems the humidity makes them swell more.A week or so ago one leg started to seep fluid. No sores as yet . Jusr seeping through the skin.I went to see a surgeon and all he could offer in the way of help was perhaps through this compression machine. But after inquireing it is too costly 10,000 dollars. The nurse is looking into it to see if Medicare would help. I have no idea how this machine operates. When the time comes, when it will be avaiable, I am sure to learn the proceedures.As it is now I will have to ly inbed for three or four days, legs elevated, take a shower in the evening and do not get out of bed other than to have to use the bathroom. At the end of the three days I will put on the stockings. The swelling goes down considerably. I am waiting to hear from the nurse. If nothing more comes of this I will have to resort to trying to get the stockings on. My mother had this condition and my daughter who is 54 has the some condition. My sister never developed this condition, neither did my brother or my son. I have printed out all the people who have written to this site and I hope that I can have some possitive news within a week. I am 81 years old and it is starting to get to me.

220. Linda Redfield reddoggo@htcomp.net
hamilton,texas , usa
September 12, 2002 at 17:44

I have reddnes in my feet and hands while walking or setting.I also get blotches on my skin in differant places . please advise on what this could mean .I am fifty years old.

Linda

219. Tracy Novak mwest915@aol.com
Morgantown, WV , USA
September 8, 2002 at 23:21

This guest book is a great idea! I wish the names could be organized by zip code so I could contact people in my area.

218. Gwen MORGAN gvmorgan@hotmail.com
Cordele , USA
September 8, 2002 at 04:13

I'm on a fact finding mission. I have had MS for 19 years. In the past year, I have developed generalized edema, worse in the lower extremities, and a 30 lb. weight gain without any change in diet or exercise patterns. I have had a fairly extensive medical workup to search for the cause, but with no success. I am taking Avonex, Neurontin, and Mirapex, among other medications, and systematic elimination of each medication was also of no help in finding the cause of the edema and weight gain. Does anyone reading this know of any association between Multiple Sclerosis and lymphedema? Any responses will be appreciated.

216. Donna Fowlkes fowlkes4christ@yahoo.com
North Bend , USA
August 30, 2002 at 19:09

I had hodgkin's disease (cancer of the lymph nodes) almost 10 years ago. Nobody told me of the possibility of lymphedema then. I am not sure if they didn't know about it or just didn't tell me....but that doesn't matter now. The doctors took out part of a lymph node in my neck on my right side. Almost 8 years later I woke up one morning and my right hand was swollen. At first I just thought I had slept on it wrong. I had not heard of lymphedema before. I didn't go to the doctor right away because I didn't have health insurance. My arm just started to get larger and larger. Then I got an infection in my arm. It was so painful that I ended up going to the emergency room. There I was told that it looked like a bug bite or cellucitis. So they gave me antibiotics and sent me home. Well, the infection went away...but the swelling and pain didn't. So, I got insurance and went to the doctor. He told me that my cancer was back because he couldn't figure out what else it could possibly be. So he sent me to an oncologist. For 3 months I (a single mother of three) was terrified that my cancer was back. I even broke the bad news to my family. Three months later I was told that it was in fact not cancer but lymphedema and that I needed a pump that cost $7,000 and my insurance would not pay for it. Other than that the only thing that they could do was give me pain medication. Then I started to research lymphedema on the internet. I discovered that there were other things that they could do. Everything that I mentioned to my doctor he said wasn't available or he didn't know anything about or my insurance wouldn't pay for.So for two years I was doped up on pain medication trying to raise my children. Then one day I was talking to my grandma on the phone and she said that her friend was diagnosed with the same thing and she was receiving physical therapy, she went to a support group, and had a sleeve that she wore all the time. So, I packed up my house and my kids and moved 1,000 miles just to try to have some sort of normal life. I just was so tired of taking pain medication every four hours and having to change it every month or so because my body would get immune to it. We just got here 2 weeks ago and we are living at my brother's house until we can find a house. We gave up everything just to try to find a doctor that knows something about this disease. I have found that nobody seems to know anything about it. I have it in my right hand and arm. I have had to learn to do everything left handed. My handwriting is doing better...it now looks like a second grader instead of a first grader. Social security has denied my disability...they say that I am young enough to be retrained and I still have one good hand. Have they tried to do EVERYTHING with one hand? Especially their non-dominant hand? Even my typing is incredibly slow, and almost any job you have to use a computer. Employers don't want someone who types so slow. Not to mention the fact that it is extremely hard to function when you are in pain. I sincerely hope that this move will find the help and support that I desperately need. I hate going out in public because people stare at me and talk like I can't hear or have no feelings. One girl was talking to her friend and said, "Oh gross, did you see that lady's arm...it was huge." Not only that but try to buy a long sleeved shirt to fit. It is not going to happen. I am a large woman anyway, and I can't find anything that fits my arm. It is frustrating. Thank you for this website. It is nice to be able to tell this to people who understand.

215. Judy Madden jbmadden@bellsouth.net
Ormond Beach, Florida , USA
August 26, 2002 at 22:31

I've been reading thru some of the guestbook and I see it's hard for some of you to find doctors that know anything about lymphedema. Try looking for a PODIATRIST that might be near you.

My family doctor sent me to a podiatrist, which I went to see today. I was only supposed to see him about trimming my toenails, which I cannot reach. Well, as it turned out, he knows a lot about LE. He talked about compression bandages, and about manual compression massage, and the care of my skin (it's all dry and scaley). He told me to get some zinc cream/ointment to put on my dry feet and legs. I told him I was supposed to see a dermatologist tomorrow and he said to go ahead and see him, it couldnt hurt to get a second opinion. I LIKE this doctor :)

The Podiatrist is also going to be working at the Wound Care Center, part time, so he will be meeting and working with the nurse that takes care of my compression bandages. I AM SO HAPPY!!!

Hang in there people.... where there is hope, and a will, there is a way :)

214. Judy Madden jbmadden@bellsouth.net
Ormond Beach, Florida , USA
August 23, 2002 at 07:38

Writing about this is new to me, so please bare with me. I did/donot have cancer or any operations where lymph nodes were removed. The first inclinling of any problems started with some "osteo-arthritus" in my knees. When I walked, sometimes I would get a burst of pain that would last for a second or two and would make my leg feel like it wanted to buckle. This went on for 6 months to a year before the left leg started to swell and the draining of fluid through sores on my leg. Being a procrastinator, I kept putting off going to the Doctor about it. After about 6 months of this, I gave in and went. He subscribed an antibiotic powder and to keep it bandaged. Nothing else. I finally changed Doctors. The next one sent me to the Wound Care Center for the open sores, which they treated, but once the wound healed, they discharged me. By now both legs are swelled and full of fluid and sometimes the open sores that drain. By now I'm disabled to the point I cant walk very far, mayby 10 or 15 ft. before I have to sit down, huff and puff, and wait for my heartbeat to slow down. By this time I've gone from 220-30 lbs. to over 350 lbs. The doctor orders home care for the wounds, lasix for the fluid retention. The nurse that attended me was wonderful. I was kind of her guinie (sp) pig as she had never delt with this kind of problem before, but she was gung-ho and together we got my legs healed and looking better for sure. After 8 months, the wounds were all healed and she was no longer required to see me. After several months it all started again. Mostly my fault as I did not like taking the lasix and going to the potty all the time..... couldnt go anywhere when you take lasix.... sigh..... Because I played around and didnt listen, I ended up incontinent and now wear a catherter 24/7/365 for the rest of my life. Good thing about it is I can now take the lasix like I'm supposed to and dont have to worry about running to the "john" all the time. Changed Doctors again, this one is great. By now my legs below my knees are all out of shape and huge. The my leg got infected again and the doctor put me in the hospital to get antibiotics introveniously. While I was in there, a consulting Doctor looked at my legs and said the word "elephantiasis". I blocked that word out, didnt sound too good. Before coming home, after 5 days, my doctor and I had a heart to heart talk. I promised to take my lasix EVERY day and to watch my sugar (I'm just diabetic enough I can control it by watching my sugar intake). He promised to do all he could to help me get better. I have the same nurse coming once a week to do the compression bandages for my legs. We hope to get them small enough soon so I can graduate to compression stockings. Today I had blood drawn spacifically to check for lymph node problems, and next week I go to a dermatologist for the dry scaley skin on my legs and a podiatrist to take care of my toes and toenails. I dont go out much, especially during the summer when the weather is so hot and the humidity is so high it's hard to breath. Around the house I use my computer chair to scoot where I need to go. When I do go out, I have an electric scooter and I have a wheelchair lift on the back of my van to transport the scooter. I can still drive, but it's easier if someone else does it for me. I'm lucky that I have a housemate that does my shopping for me and runs errands for me. She checks the mail, brings in the Sunday paper and takes out the garbage....lol. She's a great friend. Oh, I forgot, I'm 56 years old and plan on being around a long long time.

213. Thomas Leavitt info@savagestupidity.com
San Francisco , USA
August 18, 2002 at 07:32

It sounds just awful. Hang in there!!!

212. Kathy L. Brazee LSweetLeaf@aol.com
White Oak , U.S.A.
August 14, 2002 at 23:09

I have secondary lymphedema of my left leg, I am guessing it is due to the radical hysterectomy and radiation treatments I received for cervical cancer in 1997. This is not the first episode, but the most severe as far as swelling and length of time of swelling, approximately a month and a half. I received a CT scan and venous doppler, with positive results, and have recieved compression treatment for the past 2 days. I am disappointed of course to read that their is no "real cure", just therapies. I have no insurance and am receiving state aid right now, but how long do I have/want to rely on that? Will I ever be able to stand for any substantial length of time?

211. Bruce Benson medfight7@medical-flights.com
Banner Elk , USA
August 12, 2002 at 05:04

Very informational web page on a very important set of glands that can get us in to deep troubles if let run its course during infections.

210. Cathy cascadnw@pacifier.com
vancouver, WA , usa
August 9, 2002 at 13:09

Hi! I have been having problems with swelling in the legs as well as a lot of pain the joints. I had some lymph nodes removed about 22 years ago to rule out lymphoma. Currently, I am having swelling and soreness in my throat and ecspecially my tongue. This has lasted almost a year now. One doctor mentioned the possibility of lymphedema. Has anyone else had swelling in the tongue or throat area? Thanks for any input.

209. Kristine quiterio4@aol.com
springfield Ma. , USA
August 2, 2002 at 05:10

I am the mother of a 9 year old girl with primary lymphadema in her arm and hand .I have had no luck finding anyone with primary in the arm since childhood.I am very concerned that it will spread as she gets older.If anyone would like to contact me please do.We could use all the information we can get.Thanks, Kristine

208. Gail Gleason Yawaco@aol.com
Beaverton,Oregon , United States
July 29, 2002 at 20:38

Hello to all of my "sisters" and yes a few "brothers" too. I am a 51 yr. old with primary lymphedema (bilateral extremeties) onset at the age of 14. I was diagnosed in 1976-77 after my Dr. ordered a Lymphangiogram. Like so many of us,I too have repeatedly come up against the medical practioners who have either little or no knowledge of our debilitating disease. I've been treated with disdain and made to feel like I'm a hypochondriac for many years,all because there was so little knowledge or understanding about lymphedema and the tremendous complications to our bodies, minds, and our souls. Our LIVES have been compromised to a great extent and I for one am damned ANGRY because I feel that there just isn't enough of "us" worldwide for extensive and aggressive research. There are very few who haven't heard of Aids or R.A. or Diabetes and the pharmeceutical companies can profit from those who suffer with the more "common" diseases. Yeah, I know, I sound bitter. Maybe a little bit, yet really if one thinks about it thats what pharmeceutical companies are in business for. Not for easing pain and suffering (although it's beneficial if in fact it does work, being sarcastic here! heh,heh,heh) no not for such an exhaulted reason though, they are in it to make LOTS of MONEY!! Alrighty then, enough of this, I'll get off my soapbox for now. I do have a few questions to throw out to anyone who exhibits these same symptoms etc etc. I'm in stage 3 of the disease in both lower extremeties and have had my skin go through some color and thickening changes. It started slowly but has incresed at an alarming rate since the beginning of this year. My feet, ankles, and legs have gotten a dark reddish brown and the skin has been getting very thick where it started to discolor. At first I thought "geez Gail, you just got out of the shower and you didn't get your feet clean?" But no matter how much I scrubbed they just haven't returned to what I've known to be "normal" heh heh, if you get my drift? Also my hands seem to be affected now as well. For the past 4 years I have had stiffening, swelling and reddness in the joints of my fingers plus this rather unsightly thickening of my knuckles. My sister teases me unmercifully too, says I should stop dragging my knuckles on the ground and they wouldn't look this way. She's such a scamp and I love her dearly!! So is there anyone who has or is having the same thing happening ? My Dr. is clueless bless his heart. I've only been seeing him since April this year and yes like all of my past physicians he doesn't know anymore or less than his predecessors did, but, and this is wonderful but he's willing and somewhat eager to learn more about lymphedema and possible treatments for me. Now theres a giant step for mankind right there. This man actually listens to me and although it seems pretty much beyond hope for me, other than trying to get me as comfortable as possible, he's sincere when he says that whatever treatment I WANT or feel I NEED he's willing to do what he can for me, even if it may seem farfetched. In all these years and countless physicians I've stumbled upon one who is willing to treat ME the person (God forbid). Thanks for listening and hopefully understanding. Gail

207. crystal sunset1618@hotmail.com
Prince George, B.C. , canada
July 27, 2002 at 17:18

Hello, my mother has had lymphodema for the past 20 years of her life she is now 67 years of age. She is a large framed lady and the doctors always told her that it was just excess weight on her legs, which totally discouraged her from researching further... Then about 7 years ago a young intern in the doctors office told her that she had lymphodema and that she should use a lymphapress machine to help with drainage of her legs.. she has been doing this for the last 7 years which helps her a bit but her legs are so heavy still, docor says approx 25lbs extra weight on each leg, and this makes it so hard for her to walk properly,,, is there anyone who has dealt with this topic of super large legs from the hip to the knee, take care Crystal

206. Hannah hanya27@hotmail.com
Winnipeg , Canada
July 27, 2002 at 01:26

I have had swelling in my left ankle and foot for 3 months. Thus far, I've had x-rays, an ultrasound, and a CT scan (today!). I am doing my own research, as I feel very much like a guinea pig. I'd like to know if anyone can steer me towards manual drainage instructions. What I've got sounds very much like lymphedema, and if I could do some massage on myself while I wait for the medical results, I'd sure feel better.

203. Deborah Smith jdesox@yahoo.com
Chenoa, Illinois , usa
July 23, 2002 at 15:17

hello my name is Debbie and I'm 47 yrs.old. I've had primary lymphedema in my left leg since I was 13. I never knew much about this till just a few months ago. I'm so glad that I got a computer or I would have never known!! I've found alot of info and a really nice support group. I've never known anyone who has lymphedema, or ever talked to anyone either. I discovered the mld on the new site I go to. I've found a therapist close to where I live. I'm hoping to start seeing her in september. I always felt I was alone with this. It's very helpful to me that other people know what I'm talking about!! Thank you and god bless debbie

201. Brian bdc@core.com
Nashville , USA
July 16, 2002 at 06:48

I'm 47 and have had chronic LE of the right leg & foot since about 6 yrs. old. Since I was 18 I've had over 50 jobs.Usually getting fired or "let go", missing a lot of work days, or from being too physically slow from my condition. I've also been diagnoised with chronic depression, and am taking Zoloft. I applied for S.S.I. in April of 2000 and I am on my third appeal. I'd like to hear from anyone who is getting or trying to get S.S.I. or Social Security benefits due to LE.

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