My recently diagnosed son (15) has a lesion on the bone in his pelvis. Has anyone else had this and is this part of the eds?

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I don't know about a "lesion", but I get bone cysts, and other abnormalities that are part of the whole "early onset osteoarthritis" that comes along with EDS. It may be related to that. Hopefully, someone else will add their experience. Sorry about your son's diagnosis, but it's good for him to be diagnosed sooner rather than later. So much if this is joint protection...something I never did, so a lot of my joint damage probably could have been prevented. He will be okay.


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My daughter has some sort of bone cyst or lesion in her leg, which turned up as an incidental finding when she was X-rayed for a knee injury. She has HEDS and has had her hip reconstructed twice, so she had been X-rayed many times with no one saying anything about a lesion. The local orthopedist who found the lesion was concerned, but her surgeon at Mayo said they see this all the time and that they usually come and go in children. She's only 8, though, so I don't know if that would be true for a 15-year-old.

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I have not been able to find a doctor in missouri that is experienced or competent in the treatment of heds. Most drs. seem to think that we are crazy or faking. I have been through all the things that each and everyone of us go through, years and years of going to the dr repeatedly to only be told "you have a fever, let's clear this up and you will feel better" or "your young to have this kind of injury" or the ever popular "your low on iron that is why you are so tired and hurt so bad". There are more and more to the point of being a repitition of everything we have ever heard. Then one day a new rheumetoligist (hate going to new drs) Dr Alviar was the best most competent dr that i had ever seen. He asked questions that pertained to most of my symptoms including the weird symptoms, like tmj, sleep, the pain in my knees when i went down steps, and so many more. He was the one that diagnosed the heds. I got to see him a few more times, and got to feeling better and then like so many drs here in Missouri he quit and left. So did the next dr and finally the orthopedic surgeon that i had been seeing since 1998. I now have a (i won't say great) good orthopedic surgeon that has helped a lot by giving steriod injections in the right disc to relieve a lot of the pain, but when i started having excruciating pain in the thoracic area he said, "scoliosis is not usually painful. Painful it is. Luckily a chiropractor has managed to put it in far enough that i function. I am apprehensive about seeing a chiropractor often. Anyway i have been lucky, stubborn, and persistent. That is what i guess most of us are. I am the advocate for my son and push the doctors when i feel that something is not right. In most cases i know as much if not more than they do about eds. I have an understanding family physician that will listen to me and will usually give me the medications i need to get me through until i can see the orthopedic. The genetics dr at mu, seemed to be pretty knowledgeable about eds, i was pretty impressed until he said, "I want to run tests to see if your son has eds type IV, there is no test for type I, II, or III". That's funny i thought the only one that no test was available for is type III. We are now waiting on the results from those 3 tests because of all the crossover symptoms.
***Anyway finding a Doctor anywhere that is all familiar with eds is next to impossible...Has anyone else had any luck?

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My daughter has a "non ossifying fibroma" in her left femur. It was found incidentally when we took her in for knee pain that had been going on for a few years. (We did not know her pain was EDS at that time.)

Took her to a well respected pediatric orthopedist who confirmed it was benign. She had x-ray and MRI.

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