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Where are we now?

Life now is pretty much settled down. I don’t think I’ve had any more acute episodes of DVT or PE’s in the last few years (touch wood!) but that is probably more down to being in compression bandaging on the bad leg and proper Class II compression hosiery on the other leg.

The leg ulcers are as they are now really. I have never had a 100% complete healing of them. I am a medical mystery it seems. Everyone has an idea on what it might be but when I’m tested, nothing conclusive can be found. I am a reasonably fit and healthy (currently) 36 year old. Leg Ulcers in someone so young (so I keep being told) is VERY rare. I am well aware of this but it doesn’t get me any further in getting them healed. I have been poked and prodded by so many people I have probably missed a large part of this story but at nearly 3000 words, I think I have covered the most important parts!

I hope you enjoy the site!

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  1. My story – Updated | Leg Ulcer Blog

    5th January 2010 at 8:14 pm

    [...] Where are we now? [...]

     
  2. Chris Laing

    13th January 2010 at 7:44 pm

    Reading your blog amazes me. It was as if I had written it for myself. I have undergone exactly the same test and responses, along with identical comments and remarks. I too am 36yrs, and very healthy. I have had my leg ulcers for only a year though. OMG, how could you tolerate it longer? No choice – because nobody knows what’s going on. I quickly stopped using adhesive bandages and went to compression socks, which are so expensive, until I found the identical product at CVS Drugstore for $4.95pair. So I bought 10. Having them, I now change socks like bandages… as in I don’t bother using bandages. Why, washing the socks daily keeps the ulcers clean. I’ve tried many things. I found the best was submerging my foot into water and then bubbling HHO over it… yep, Hydrogen – Oxygen straight from a HHO cell. But tedious, it healed for a while, but the ulcers return. Drinkable Aloe Vera gel spread over the ulcers worked on 2 of my ulcers and things are looking better. But unbelievable how I can’t find the cause, should they return. What’s your current status?

     
    • LUS

      13th January 2010 at 9:26 pm

      It can be very difficult to put up with the ulcers at times but its a case of what else can you do? I do have compression socks on my “good” leg but they feel they are not yet appropriate for the ulcerated leg. When I have personally used them on the bad leg, my ulcers seem to break down more. I’m not sure if that is due to them not having enough compression in them or I just don’t get on with them. They are expensive in this country as well (I’m in the UK) and they are not really available off prescription.

      They should be around £7.80 but luckily I have what is know as a pre-payment card so I pay around £10 (about $16) a month and I can have an unlimited number of prescriptions for that price. I certainly use this for all the dressings etc that I have to use. I am currently changing the leg every two days so you can imagine, it uses up A LOT of dressings!

      I have heard of Aloe Vera gel before, not from a nurse though, just from some reading on the internet. I have also in the past tried some Active Manuka Honey but that didn’t really seem to work very well (it was difficult to keep in one place for a start! I do believe that they do a MH dressing pad though, might be worth a look, nothing to lose!)

      I will update on the latest tomorrow when I do another dressing change tonight. I have not posted so many pictures recently as there has not really been much improvement in them, not any worse either so that’s a small blessing!

      Hope you keep on reading! If you are on Twitter, please follow me and you will know when I update then. I’m at http://twitter.com/leg_ulcer or click the follow me at the top of any page!

       
  3. LK

    21st February 2010 at 4:03 pm

    I am also 36 and have had a similar problem for years, my problem was diagnosed as Pyoderma Gangrenosum. Has that been suggested for you? Its typically deep receurring ulcers with a raised purple edge. There is a yahoo group with more info / pictures. jusr do a google search for Pyoderma Gangrenosum.

     
    • LUS

      22nd February 2010 at 9:49 pm

      Ah, I have never been diagnosed with anything substantial, that is the point! I have had a quick look at http://www.patient.co.uk and have noticed a couple of points which might be of interest to my consultant. I have indeed suffered with IBS (Irritable Bowel Syndrome) in the past though that was some 10 years before the first ulcer. And obviously the age is about right.

      I am hoping the next appointment I have with the Consultant that I actually get to see them or I will request to see them. I do want to know what is the cause of this as no one has ever put their finger on it. Without doing that, there is no way they are going to be able to find a longer lasting solution!

      Thanks for the information, I will post here when I get to see them at the hospital what my results are, though I won’t be holding my breath! They haven’t found a reason in the last 6-7 years :(

       
  4. L.Pelletier

    31st May 2010 at 12:44 am

    i am 31 i ahve had a history of 3 dvts and a p.e. i can totally relate!!! i ahev been diagnosed with protien s deficiency which is a genetic coagualation disorder, you have to have a genetic work up for this it will not change your treatment but it may at least provide you with the “why” these things ahve been happening. my son has also had his history of clotts, but only when i literally had a fit did the dr.s check for any disordeers, he has the protiens s and has had a stroke and renal clotting and his first leg ulcer at 12 my second son with some loud persuasion was also tested but not soon enough he had a stroke at 11 days but is fine, but has folic acid deficiency another inherited disorder that can predispose a person to clotts! my daughter has anti thrombin 3 another one of the clotting disorders that can be passed down there are numourous genitic disorders that can be passed and are really worth looking into as they have know preference and strike when ever they want.
    I had the first dvt at 15 and my first ulceration at 21 so ya i guess that makes it a decade of healing up the same wound over and over again the last was so deep even with full compression thae i had exposed the viens in my wound and had to have the removed by a vascular surgeon this last episode has been going onn for almost 2 yrs now and i have literally watched the wound deteriorate literally form just needing a few more layers off healthy tissue to be good and healed, to being in the hospital with the wound tunneling underneath the healthy tissue and shooting excrutiating nerve pain up my whole leg in 2 days, not to mention the smell of and open wound i can smell it i know other people and i do have to admit i did chuckle at the febreeze comment as i have tried to be just as crafty with fragrances!! any ways a real breath of fresh air to know that im not the only one with these issues and as some treatments work some times beter than others for some people all we can do is try to maintain an up beat attitude and not let it wear us down

     
  5. Ron

    25th February 2011 at 12:47 am

    Hi guys

    There are answers to your leg ulcers. I have been treating mine very sucessfully for 30 years now. On occasion I get one that I close very quickly. I use to have this website up a many years ago but took it down. Now I am rebuilding it.
    Come share the knowledge.

     
  6. Sue

    24th January 2012 at 7:11 pm

    Hi I also have (5th-6th old leg ulcer)
    I am having prob with draining from one
    Spot in wound ( nicked it with my nail)any advise on stopping it ?so bad my large sponge
    Bandages soaked threw in min my foot skin
    Always soaked

     
  7. Margaret

    30th August 2012 at 12:33 pm

    I am interested to read your blog. My husband has just developed an ulcer, and at 53 m he feels that this is going to change his life. he loves walking, fishing, skiing . The future is depressing

     
  8. vicky

    16th November 2012 at 12:35 pm

    hi, my husband also suffers with chronic leg and foot ulcers and is only 38 years old. He too has been prodded and poked for years and still they are not healed.
    He has never come across anyone else so young that has the same problem! Maybe you could be of help to each other?
    Vicky

     
  9. javier

    7th February 2013 at 3:50 am

    im in the same situation 29 years old and leg ulcer that no ones know why im with it.

     
  10. Cathy

    5th October 2013 at 4:34 am

    Do any of you smoke, have diabetes or any heart disease? What about any other vascular diseases? Sounds a circulatory problem, which I’m sure you know that. One last thing to consider is necrotizing fasciitis. Otherwise known as the flesh eating disease. I believe that can begin with a bacterial infection & is extremely, if not possible, to cure.

     
 
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