My Introduction
My name is Paul Riddle. I was born and raised in Sacramento, Ca and I still reside here. At the age of 28 (2003) I was diagnosed with a very rare disease called Lymphedema Praecox. Which is a hereditary disease of the Lymph System that occurs at Puberty(Praecox is Latin for Puberty). Basically my legs retain about 10% water because my Lymph system doesn't shoot the water up to my kidneys properly.
Here is some good information on Hereditary Lymphedema.
http://www.lymphedemapeople.com/thesite/hereditary_lymphedema.htm
How I was diagnosed.
I was hospitalized(Kaiser South Sacramento) with a painful infection of both legs in May of 2003. After the doctors who treated me had my infection under control. They were puzzled at first as to why my legs and body had become swollen. 3 specialists started asking me lots of questions about how I got that way. They asked me when did i start noticing any swelling. I had to think about that for a bit so they said they'd come back the next day.
After thinking about it for the day,I was pretty certain I was about 13-14 when my ankles..Primarily my left ankle started to swell everyday after I was out and about being a junvenile delinquent;-). Evidently over the years the swelling creeped up on me. I was hospitalized in 1997 after having a brush with the Grim Reaper(Broncitis and the Flu back to back plus a very low oxygen level due to Sleep Apnia) but the Drs at UC Davis Med Center never noticed anything so it wasnt really till about 2001 I knew I had a problem. (I had no idea what it was though so I was stupid and I did nothing about it. Wasn't till my lower legs got infected that I went to the hospital. I could've saved alot of pain and the scars I now have if I wasn't so stubborn and just downright stupid. I was embarrased. I had friends who I would make excuses if they wanted to meet for coffee or hang with here in my hometown/home. Friends for the most part I lost or barely talk to. My own fault).
The next day the doctors came back to say I have Lymphedema Praecox and that I had to make some Dietary changes. I was told I had to be on a permenant low sodium (salt) diet. That I can no longer have caffiene(NOOOOOO!!!!) or alcohol(I never drink it anyway) and I need to stick to a 1200mg a day diet. And that the food shouldn't have any preservatives since thats what salt is. I also had to drink twice as much water as most people with can be a pain in the ass! I also wear stockings which can be a pain on a hot summer day.
Its been 2 years and I struggle with the diet since i'm a chocaholic and I love ice cream and am a pig I admit it. :P
I have my good days and my bad days but its been alright. Im slowly learning how to eat right. I'll get there someday.
Here is some good information on Hereditary Lymphedema.
http://www.lymphedemapeople.com/thesite/hereditary_lymphedema.htm
How I was diagnosed.
I was hospitalized(Kaiser South Sacramento) with a painful infection of both legs in May of 2003. After the doctors who treated me had my infection under control. They were puzzled at first as to why my legs and body had become swollen. 3 specialists started asking me lots of questions about how I got that way. They asked me when did i start noticing any swelling. I had to think about that for a bit so they said they'd come back the next day.
After thinking about it for the day,I was pretty certain I was about 13-14 when my ankles..Primarily my left ankle started to swell everyday after I was out and about being a junvenile delinquent;-). Evidently over the years the swelling creeped up on me. I was hospitalized in 1997 after having a brush with the Grim Reaper(Broncitis and the Flu back to back plus a very low oxygen level due to Sleep Apnia) but the Drs at UC Davis Med Center never noticed anything so it wasnt really till about 2001 I knew I had a problem. (I had no idea what it was though so I was stupid and I did nothing about it. Wasn't till my lower legs got infected that I went to the hospital. I could've saved alot of pain and the scars I now have if I wasn't so stubborn and just downright stupid. I was embarrased. I had friends who I would make excuses if they wanted to meet for coffee or hang with here in my hometown/home. Friends for the most part I lost or barely talk to. My own fault).
The next day the doctors came back to say I have Lymphedema Praecox and that I had to make some Dietary changes. I was told I had to be on a permenant low sodium (salt) diet. That I can no longer have caffiene(NOOOOOO!!!!) or alcohol(I never drink it anyway) and I need to stick to a 1200mg a day diet. And that the food shouldn't have any preservatives since thats what salt is. I also had to drink twice as much water as most people with can be a pain in the ass! I also wear stockings which can be a pain on a hot summer day.
Its been 2 years and I struggle with the diet since i'm a chocaholic and I love ice cream and am a pig I admit it. :P
I have my good days and my bad days but its been alright. Im slowly learning how to eat right. I'll get there someday.
posted by Pauls Blog at 4:19 AM
3 Comments:
Paul,
I too have lymphedema. What kind, I don't know - I think congenital. Have you tried the treatment centers. There is one in Sac in Fair Oaks. I'm thinking about the one at Stanford.
Its funny you mention being 14 when you're swelling started; me too. Started in 1 leg and that same leg is still the worst one. I think I'm a stage 3 because my skin is harder and fragile, and I have a little fold at the ankles. I keep my skin soft by putting vaseline (big dollup) in my hand then lotion and kinda mixing them. That's what I use to moisturize. My skin doesn't feel as soft and its better than just using lotion alone. I haven't developed infections but I'm starting to have this problem at the junction between my ankle and foot, it itches like crazy and I could literally scratch it till it bleeds and have. I try really hard not to scratch it at all now.
I just wanted to chime in as another Lymphedema sufferer. Mine is considered "Primary Lymphedema", in my right leg only. My swelling began in my toes/feet when I was a teenager. This was nearly 30 years ago, so at that time the disease was really unrecognized. When I was about 20, a doctor saw it for what it was, and we "caught" it in time to avoid much treatment other than stockings and preventative measures (ensuring no cuts, etc. etc. etc.). Anyways, thank you for posting your information publicly, more people and doctors need to be made aware of this affliction - I'm frankly very tired of living with it, to the point I'd almost rather lose my leg than deal with the side effects.
Hugz to you.
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