Guestbook Number 11

Numbers 251 - 275

March 6 - June 7, 2003

See also:

Go to the bottom of this page

275. Donna lakota_664729@hotmail.com
Richmond , USA
June 7, 2003 at 15:54

I had cellulittis in right leg for over a month is this the same thing that you all are talking about Lymphedema ??? I have been on antibotics over a month. It is finally went away and doing better, does this re-accur also does it have any thing to do with being diabetic.

274. Tatum Robinson robinsontatum@hotmail.com
Victoria , Australia
June 6, 2003 at 03:56

Im nearly 17-years-old and was told i had lymphedema when i was year 7. I know what it is like wearing those uncomfortable stockings 24/7. it's hard going to school and people teasing me because one leg is bigger than the other. I wan't born with this disease it developed when i was going through adolescence. I'm writting to you because im wondering if anyone is taking some sort of medication to reduce the fluid that goes into the effected limb. If so please contact me. my dream is to go down the beach this summer and swim with my friends and not be teased by other people. Thanks a million. Tatum xoxxo

273. cass harris cassfithave@aol.com
bowie , prince george's
June 5, 2003 at 20:40

I am anxious to find out if chiropractic treatment can help a patient with lypmphedema in the toes?? The ace bandages and wraps are so time consuming and the stockings are far too uncomfortable with summer heatr and humidity. Also, can a conditon of lymphedema in the toes potentially cause cancer?

272. Cindy cinn_48158@yahoo.com
Hanover , USA
June 3, 2003 at 19:07

I have had swelling and pitting in my legs for about 5 years now. My doctor keeps teling me its due to my blood not circulatating right. I knew it had to be something more then that. A man came up to me one day and asked me if I ever heard of Lymphedema. Then he told me berifly what it was and pointed to my legs and said "You have it" He gave me a card and said his daughter has it and they have had a hard time tring to find out what it was. They finally did and now he goes around and if he sees someone he thinks has it he approches them and tells them about it and gives them the card. Its so nice to know people do care about others. I looked up some info on the net along withmy daughters and made an appointment with her. I wen yesterday and gave her the inof I printed out. She said yes I do have it but says because I have it in both legs then its probably due to my weight. She wants me to start taking Lasex and get the stockings and go for theopy. Now all I have to do is find out how much if any my insurance will pay. Otherwise I cant do anything untill our finances get better. I dont really have any pain in my legs but do have a hard time walking. We go to a lot of car shows with our truck and its hard not to be able to walk around and look at everything. I'm not reallu sure how much this will change my life style but guess I will do what I have to. am just glad to finally know what is wrong with my legs and that there is something I can do for them. I wish all of you the best of luck and Thank you all for having this kind of site that people can go and find out more info and know they are not alone. I will be here for anyone that would like to have a pen pal. I am knew at this illness but would love to share experiences with anyone. Feel free to contact me anytime. Hugs to you all. My prayers are with you always.

271. Deborah mrsdmt@bellsouth.net
Birmingham, AL
May 29, 2003 at 02:48

I am a 33 year old women that discovered I had Lymphadema last year. I got this swelling in my right leg one summer and after going to about 50 doctors, I was diagnosed with Lymphadema. I immediatly started treatment with the compressed manual drainage. After about four days my leg was back down to normal. I started wearing the support stocking and taking prescribed water pills and my leg is only about 2 inches larger than the other. The bad thing is summer has come around and one day in the park with my kids without my stocking my leg has swollen twice the size again. I read where this doctor had performed liposuction to an Lymphadema patient and the swelling went away. The only thing is having several cut to the skin, but if this works I can deal with the cuts. Has anyone out there had any other treatments that has worked. Has anyone tried the BIOCompress, because $600 on a system that doesn't last seems worthless. HELP!!!!This condition is driving me crazy and depressed. I wan tto wear my sandals again and a skirt above my ankles.

270. Karen Roberts mskaren01@bellsouth.net
Memphis, TN , USA
May 23, 2003 at 04:33

I am a 23 year old woman who has been living with this disease since the age of about 10. It was so hard to go through school with this disease because children do not understand and thay can be so cruel. Over the years I have learned to deal with it. I used the leg pump and the stockings to no avail. The swelling never leaves my leg completely. I don't even bother with wearing the stockings anymore. My family was very supportive of me. I did not allow the disease to stop me from doing anything. I played several sports in high school without any problems. I would like to offer encouragement for the children who live with this disease. Don't allow it to stop you.

269. Kristy Elkins prison30@charter.net
Murray , USA
May 16, 2003 at 15:29

I have lymphedema in my left leg and it was brought on by a terrible motorcycle accident that I had in 1992. I have had it pretty bad since 2000. My skin is in terrible shape and I am starting drainage therapy next week. I too suffer from a disfigured leg that looks so bad that I refuse to wear shorts or a skirt. When someone happens to see my leg, I am shocked at their reaction. I just want to have a normal looking leg like most of the legs in the world. My ulcers are getting worse and worse and now my skin is very painful. I hope that the therapist here in my home town can help me because I do not have much hope for the way it is now. If anyone can give me some support I would greatly appreciate it.

268. Alison Pollack atopix@aol.com
Oceanside, CA , USA
May 14, 2003 at 19:42

Hi everyone -

Great to find this site. I am 67, look after my husband whose legs are paralyzed, we both work and I have had a huge swollen leg since a hystermectomy (for prolapse). Now the left leg has the same after repair surgery. My rheumatologist told me it was due to years of prednisone, but I know darn well it is from the surgery.

Like everyone else, I was very fed up with the lack of knowledge or interest from physicians and the "positive" attitude of therapists who are young and healthy and cannot seem to understand the time loss/energy drain/limitations resulting from this or how weakening it is for walking around.

I have found the Comprilan bandaging every night plus Jobst zipper knee high stockings have reduced the swelling a lot, but how I hate being encased in elastic day and night! And we have a good few laughs over the struggle to get the stocking off and on, me with arthritic hands and my husband in a wheelchair! Between us we get it done, but the whole thing takes so long. However, it's worth it to me as I do get rid of the worst of the swelling and feel stronger in the legs wearing them.

Has anyone seen any real results from the massage? I'm very skeptical that it does anything but waste time.

I'd love to hear from anyone who is dealing with this stuff as a senior. It's so great to find that there are other people coping - Drs. seem to have zero interest in things that can't be cured.

Hang in there!

Alison

267. Carolyn Lokes2000@aol.com
LaSalle , USA
May 14, 2003 at 02:42

I just found out today thatI have lymphedema (I think) my doctor-- without seeing me first-- sent me for an ultrasound to rule out blood clots in my left arm. Thank God I am right handed. Anyway I wasn't too worried about a little swelling and pain until I came across this site when I was checking into lymphedema to see what it is all about because my doctor only mentioned it casually before my lumptectomy, radiation and chemo a year ago in April 2002. My my now I can see why they dont tell you more about it beforehand!!! If anyone could e-mail me I appreciate it so I can learn more about this horrible thing. Thank you for this site!! Carolyn

266. maja creol@net.hr
rijeka , croatia
May 6, 2003 at 00:06

I'm an (almost) 18 years old girl, and I'm suffering from lymphedema in both legs.. I can really relate to Amy Lynn, I know it's hard, and although I luv summer, I get horrified each year because of dispozing my "beautiful" feet on the beach...: (I know it sounds ridicoulous, but I sometimes avoid going on the beach with my friends because of it! Me, a girl who lives for summer! I don't wear sandals anymore, I don't wear shorts or skirts, I just wear long pants. And the most frustrating thing in all this is, that I wasn't born with it, it came all of the sudden, out of nowhere...and the most ironic thing is, that I used to have really, really thin feet! It really is the truth, that you don't know how lucky you are when you don't have any medical problems. And there's one other thing. I truly believe that lymphedema isn't searched enough. You're just stuck with those damn stockings or those boring lymph dranaiges... It's a great thing that I can share my feelings and experiences with people who really know what I'm going throw. If anyone wants to e-mail me, be free to do it, I'm really looking forward to it! bye!

265. Daphne Maltby, daphne@bodgate.freeserve.co.uk
Nr Launceston, Cornwall, , England.
May 4, 2003 at 15:31

My name Daphne Maltby i have been suffering with Lymphedema (something i have never heard of until now) for just about 5 years and 3 months. It seems to have started, since being pescribed, accoring to my GP, a new drug Motens (Lacidipine). I was for the first week pescribed 150 ml and a week later my GP upped the dosage to 200ml, i noticed that my left leg started to swell up badly. I told my GP and he made virtually no comment. Four to six weeks later my right leg started to swell up as well,my legs looked like Elephants legs. They soon started to emit fluid, as well as being very painfull. I was put in compression bandages for three months. This was agonising and made things much worse. I have since learned, that my Lymph Nodes have been destroyed. In November 2001 and November 2002, i was rushed to hospital, where i nearly died on several occassions. While in there, i suffered blood poisoning, transient blindness (which as you can imagine was terrifying),epilepsy,and renal failure on both occassions. As a result of this my life is now completely ruined, i cannot walk or go to the shops anymore and i feel so depressed. I am now on approximately 20 different tablets a day. If anybody out there, has had this problem, since taking the above mentioned drug,i would be very pleased to hear from them. Please would you email me and let me know, if this has happened to you. Kindest regards Daphne.

264. Joyce Swagerman
May 2, 2003 at 23:20

I would like to know what causes cellulitice, what is it and what can you do to correct it. I had a stress fracture in my left foot about 12 yrs. ago I'm also a diabitic. I have good cirulation but the left foot does swell. Give me some infromation. Thanks. Joyce S.

263. Suzanne Schmick suze360@optonline.net
Warwick, New York , USA
May 2, 2003 at 19:49

Diagosted with a malignant melanoma on top of my right foot in 1990, I was told that I would need to have "radical disforming surgery" because of the size. So, on July 2, 1990 I had a full thickness skin graph done on my foot taken the skin from my left groin area and the removal of my lymph nodes in my right groin area. The lymph nodes were clear of cancer and I was told to get back to life, I had just turned 30. Never was I told that a consequence of this surgery may lead to lymphedema.

To make a long story short, When I went for my check ups I had to have $500 cash upfront so, since I could not afford that the melanoma went unchecked for a number of years. 1994 I feel and hit the left side of my head and my right side went completly numb. Upon haveing a CAT Scan The melanoma had bypassed my lymph nodes and metastized to the left side of my brain. Had brain surgery and radiation to my head and thankfully it was self contained.

In 2001, thinking that I had seen the last of this disease, I noticed that my right foot was looking larger than usual. Again, with all the teams of doctors that were involved in this whole mess NOT 1 OF THEM EVER mentioned that I may develope lymphedema. So, thinking that it's going to go away I never asked my oncoligist what this may be. I go to my scheduled check up and mention that my foot is looking larger than it did before. Checks me for a blood clot and any blockage and then informs me that I have lymphedema and here's a script for physical therapy. Therapist tells me I'm going to be "Just fine" gives me a regular compression stocking off the self. Needless to say mt foot is becoming larger than the large before. Called the doctor and he gives me another script for PT. I still do'nt have a clue of what lymphedema really is. Upon metting with this next PT he looks me dead in my eyes and tells me nd I quote "I hope that your Dr. told you that there is no cure for this and that it's going to get worse." Well, I think that you can imagine my horror. How can I be cured of cancer 4 times, I had 2 bouts of cervical cancer besides, and this lymphedema can not be cured?

After that I went on a 1 woman mission. I went to everyplace around my area, NYC, New Jersey and upstate New York and was extremely dissappointed with the results. So, I turned to the internet.

After searching for months, I stumbled upon this site called The Ultimate Health Center that claimed it is the only lymphedema treatment center that takes the holostic approach to this dreaded disease. I had even considered suicide before reading about this place.

Of course I still have lymphedema in my right leg but, with taking the supplements that this therapist suggeststo build up the veins and increase the circulation in my leg and his treatment (CDT) it looks 100 times better.

So, I feel that even though there is no cure, I have found the next best thing. Check out the site when you have a chance, there's alot more there than I can tell you here.

Good Luck to all of us.

Suzy Schmick

262. Bonnie Schwartz bonniedschwartz@juno.com USA
April 30, 2003 at 02:55

I just happened to stumble upon this site. I knew that I wasn't alone with lymphedema. I have primary lymphedema in my left leg for about 16 years. I wear a compression stocking on my leg. I asked my doctor a number of years ago about going to a therapy center and he would not give me a referral. I am calling him this week because I want to go to an oncologist. If anybody has gone to a therapy center and it has worked for you, please e-mail me.

261. Amy Lynn StarLite725@Aol.com
New York City , New York
April 23, 2003 at 01:03

I am so excited to know that there is actually a place to vent and so many other people who are going through this frustrating illness. I am going on 20 yrs old and I've had lymphedema in my right leg since I was 15 yrs old. Im so young and Im ALWAYS on my feet!! I love to dance and Im an Assistant Manager in retail, therefore I am always on my feet. I have not yet experienced much pain in my leg and I do wear my compression sock daily, but will this hit me in the butt later?!? I especially hate the summer time because everyone stares at you and I can't deal with that! Someone actually once told me "You forgot to put on your other stocking!" I wanted to cry :( I am curious to know what do the ladies do in the summer when we need to remove all the layers? I try to keep my fashion up to date so that my stocking attracts less attention but I would love to know what other people do. If anyone has any ideas or advice and would like to share their experiences please email me :)

260. Fernando Ortegon SR. G6827@AOL.COM
Austin,Texas , USA
April 22, 2003 at 03:18

I swell very large on my left leg. My right leg swells but not as much as my left leg. My problems are with my doctor. I make an appointment to show him my ankles, my left side is very red and hot, but all he tells go home and lift your legs. No sooner said than done I have be taken to the hospital and spend at least five days, with a bad infection. Are there any doctors that specialize in edema any treatments, medications etc.? My ankles and legs hurt me a lot.

259. BobG bobgwmspt@hotmail.com
Williamsport, PA , USA
April 13, 2003 at 12:30

My father, age 81, has just been diagnosed with Lympedema in both legs. After consulting with his Dr., the only feasible way to treat this is purchasing a Lymphedema, or variable compression, pump and boots. Understanding that a perscription is needed, I am looking for online pricing.

ANY SUGGESTIONS ????

THANKS !!!!

BobG Williamsport, PA bobgwmspt@hotmail.com

258. Susan portauxbasquesgirl@hotmail.com
Dartmouth, Nova Scotia , Canada
April 3, 2003 at 20:13

Good day everyone, My name is Susan, I am 30 years old. All my life I have had large legs, enough that it was embarassing but I still was able to wear shorts. I got pregnant when I was 27 and had a wonderful pregnancy, I am a large lady to start with and to some it was hardly noticeable that i was even pregnant. I gained 28 lbs all together which was great, my PB was fine .. my dr was surprised!. The day my beautiful daughter was born I started to swell in the lower legs.. like I said they were always big, but now were hard and swollen. My dr prescribed diuretics, I went and had an ultrasound, there was nothing wrong that they could see. I lived with it every day, I would take the fluid pills, and pee all day, I would wrap my legs and get temp relief, I battled the sores and used creams regularily. Finally I could take no more and went to the dr as I was nto having pain in the front of my lower legs, She sadi I had an infection and needed antibiotics right away, She also set me up with a dermatoligist. I found relief with the anitbiotics and the cream the dermatoligist gave me was nice and soothing. Today I have had a follow up with the dermatoligist and am now going to start on a pump.. Today my legs are seeping water and have sores and cracks, they are shiny from being so big but not too painful. This pump is what I am wondering about, she said it woudl be administered by a nurse at first until i adjust to it, I have Milroys disease and after a close family look, I now see my cousin has it .. my great grandmother had it and so did a great aunt. I would love to have someone to talk to about this. especially the pump! Thanks

Susan

257. diptee diptee_p@rediffmail.com
pune , india
March 27, 2003 at 09:48

I would like to suggest you all that you can try some Ayurvedic Treatment to get well soon. There is an excellent Ayurvedic Center known as KARE, situated in misty valley, just 45 kms. from Pune at Mulshi. Kare aims to deliver the perfect advantage of Ayurvedic Treatment, which is a universal remedy. Treatment Packages will be available for 7 days, 5 days (Monday to Friday) 2 days (Saturday & Sunday) One day & Half day. Kare have good doctors from Kerala, flexible schedules that wrap around your convenience. The Food Served will be vegetarian and designed individually for each person according to his /her prakriti (Constitution). I felt very happy and satisfied after a treatment of just one year. The environment at Kare is so wonderful that will also help us to cure soon.

Regards,

Diptee

256. karen kmfp2ne@hotmail.com
cincinnati , usa
March 23, 2003 at 15:04

I am interested in coresponding with a "young woman" about 50! I have had LE for the past 6 years in my right leg; I would love to share my experiences and learn some stylish ways to dress in the spring and summer!

255. Patri Rongorongo@aol.com
Fairfield CT , USA
March 19, 2003 at 19:51

Hello! A neighbor who also has the edema problem asked me if my really fat right arm (and hand) was due to edema. I said yes, I've been this way since I had a malignancy removed from my upper arm when I was 15. I'm now 51. Tumors never reoccured, but the edemic swelling became a far worse problem! Since therapy was painful and ultimately useless beyond a very minor result I had surgery in 1981 to relieve the swelling. That was a disaster so not only do I have the edema, but a grotesque open draining (and infected) lesion that I have to bandage to contain the leaking edema. However I've lived a very long time with this and have not allowed this medical condition to prevent me from being otherwise "normal" (luckily I'm an artist type so I'm considered a little weird anyway!). I realize most people wouldn't be dealing with such a situation creatively- they could become a recluse, an alcoholic, maybe a even a drug addict. I can imagine many giving this condition as an excuse to not get involved with lifetime enjoyment or becoming "too" pre-occupied with their "condition". Luckily I've managed to avoid that. There are many things that I can't do with only one useful arm, however I get a real kick out of amazing people with feats of ordinaryness like tyeing shoelaces and driving a car. My arm is now really ugly and weird-looking and people routinely stare (especially kids) and I have to wear a plastic splint (that I cast myself!) and a sling. I'm skinny and good-looking otherwise. Some people actually expect me to be "not normal" I take that to mean psychologically damaged and disfunctional. That just kinda makes me chuckle. One of my long-time friends recently said to a person who had just met me "Don't let that arm fool you".

254. Mishelle grumpygram57@aol.com
Portland , USA
March 16, 2003 at 08:18

I have had reacuring problems with cellulitis off and on. Just the other day my leg started to hurt a little. I knew it was not just a regular pain. I went to hospital because over night the leg blistered and turned red on the front and back. It turns nasty and mean so fast it is scary. From now on I will see a doctor as soon as I feel that beginning pain. I hope there is something that can be done to stop this from happening. If one does not have the means of taking the antibiotics it could get out of control very quickly..

253. Nessa Nessa005@yahoo.com
Beach Park, IL , USA
March 7, 2003 at 21:12

Hi all! Just wanted you all to know that you are not alone. I have Primary Bilateral Lymphedema. I was diagnosed in 1998 but have been told by my doctors that I have probably had it since I was born. I'm presently in therapy. I go 5 days a week and am sometimes in therapy for 2 and a half hours. One of those hours is for MLD. And the rest is the AquaTrex. Its really cool. I'm interested in hearing from you. Please feel free to email me and maybe we can become Email Pals! :-) Have a great day! Think Positive! - Its my new motto! Nessa

252. MARJORIE INSTARS@WEBTV.NET
NASHUA , NH
March 6, 2003 at 03:02

I am so glad to know there are others like me out there. I have lymphoedema milroys disease.I am having a hard time with this. Its hard for me to get around at times. I am sixtyseven years old and a widow. I have no friends. The swelling is so bad in my legs. do stockings help at all. If any one could help me with this I would be grateful. If anyone would like to e-mail, they can.

251. Susan scarr@dp.net
Morgantown, WV , USA
March 5, 2003 at 00:07

I am a 46 yr old woman who was diagnosed with abdominal lymphedema last fall. I had noticed a tender spot on my abdomen which grew and led to cellulitis. It is now stage III, hard and fibrotic. The only thing the dermatologist said was not to let a plastic surgeon do surgery on my abdomen to try to reduce the area and that it would get worse. Just what I wanted to hear. I have had severe swelling of my legs with pitting for about 10 years now. The skin on my legs is very dry and so full at times I'm amazed it doesn't burst open. I've been on every diuretic known to doctors. 80 mg. of Lasix 3x a day doesn't even take the swelling down. It is so hard to walk and I can't wear shoes, just felt slippers (mules). I even tried on a pair of beach thongs for summer today and couldn't get the thin straps up onto my foot. Last month I took Medrol for swollen glands and pain in my neck. I could not believe the difference in my legs. I had ankles again! It helped the fluid to drain like nothing has done. I could wear Nikes I hadn't gotten on in over a year, my clothes were looser around my mid-section and I just felt better overall. I am now searching the internet for information to give my doctor about using Medrol (4 mg) every 2 days, then 3, 4, etc. to see how low a dose I can take and still be able to walk comfortablely, wear normal shoes, and be able to tell I actually have legs, not tree trunks. I am very afraid of the lymphedema getting to the "orange skin" look on my legs, too. My abdomen already looks like this. I also have Chronic Fatigue Syndrome/Fibromyalgia, asthma, Irritable Bowel Syndrome, Interstitial Cystitis (all stemming from the FMS), arthritis, and migraine headaches since I was 11. I am a licensed pratical nurse who can no longer work because I can't stand on my feet or walk for more than short periods at a time. If anyone has been on Medrol (methylprednisone) or prednisone and it helped your swelling, please email me and let me know. God bless.

Go to the top of this page