KTS Help if you can....
I am a 36 yr old women who found out at 29/30 after almost a year of tests and tests and more tests then Dr after Dr. 5+ "surgeries" later here I am. I am still at a loss on what if anything I should be doing to monitor it. I now have 2 herniated disks in my back and I was rejected by a Dr. Bc he said it was my disease which a lot of things get blamed on. Like my RT foot which is my affected limb pain and swelling. I fell and tore screwed up both feet and ankles. 2 months later I am no closer to getting better and now my vascular system in the rt leg is doing the wonderful traveling pain game into my pelvis. Little scratches or ingrown haits are turning into open wounds that take months to heal.. I have 2 on my stomach that haven't healed and its been like six months. I ended up with a mass in my rt breast that was the size of a large egg and painful. After many tests they didn't know what it was so out it came leaving a huge indent on the side of my boob and it turned out to be an overgrowth of tissue. Go figure... Extra blood flow tissue growth. Safe to say KTS related? Anyone know what I should be doing? I've been on pain management since all of this..... I'm lost again. Any help would be much fabulous. Also headaches. So many headache and I'm anemic. Thank you all :)
It definitely sounds KTS related. I am 34 with right leg KT. Ingrown hairs and scratches turning into sores sound like you are getting ulcers which do in-fact take a long time to heal. You have to be careful because us KT'ers are very susceptible to cellulitus as well.
Not sure if you are aware of the www.k-t.org website, but every other year the KT Foundation puts on a meeting at the Mayo Clinic. I have never been to it, but I am going next year. It's in July. The website will have all of the information.
Also, not sure if you're aware that on Facebook there is a KT group. There are LOTS AND LOTS of extremely knowledgeable people on there. I myself have not had ulcers, but many on there have. One guy in particular, Gordon Lee, is a wealth of knowledge and he has learned how to treat his ulcers on his own and has some good wisdom to impart.
All of us KT'ers know the frustration of not getting the medical care that we need, not because doctors don't want to help but because they simply dont know what to do. Join the group.... https://www.facebook.com/groups/8467752908/
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