Discussions By Condition: Medical Stories

Osteopoikilosis??

Posted In: Medical Stories 20 Replies
  • Posted By: sbgg41395
  • March 21, 2008
  • 04:59 PM

Do you have it too?? I have this rare bone disease, diagnosed years ago when doctors thought I had bone cancer. They say there are no symptoms of this disease but I seem to heal much slower when I injure muscles or ligaments that attach to a bone. I also have chronic muscle and bone pain and I have severe back pain and vertebrae that will not stay alligned. This is a very rare bone disease and I was just wondering if anyone else had this and if you did, are you having any problems? I will be surprized and overjoyed to hear from you if you have received this diagnosis. This can also be referred to as "spotted bone disease".

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20 Replies:

  • Sounds horrible.http://www.orthopaedicweblinks.com/Detailed/10638.html But how can you have it if you have symtoms... the symptom is supposed to be "NO SYMTOMS" :confused: Maybe you got a WRONG DIAGNOSIS?
    TaylorDeelwithit 382 Replies Flag this Response
  • I have this but, I also have skin leasons. What are they?
    Anonymous 42789 Replies Flag this Response
  • I have a 6 year old son that has constantly complained of leg pain and was recently told he has this disease. They did x-rays and they found bone islands that did nothing to the bones and called it this spotted bone disease. They say it does nothing to hurt him but it does hurt him. My brother was told he had this disease years ago and has no problems with it.
    Anonymous 42789 Replies Flag this Response
  • Sounds horrible.http://www.orthopaedicweblinks.com/Detailed/10638.html But how can you have it if you have symtoms... the symptom is supposed to be "NO SYMTOMS" :confused: Maybe you got a WRONG DIAGNOSIS?I am a 26 year old man who also has osteopoikilosis. and i have never had a problems with the condition. the only side effect i have noticed is that i am the only person in my family that drinks milk, and i have never had a serious bone break. the doctors told me about it when i broke my wrist last fall (hairline fracture).
    Anonymous 42789 Replies
    • November 23, 2009
    • 03:54 PM
    • 0
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  • I have and my whole family able to trace this family gift / curse. spotty bone for the way the x-ray show large amount of calcium deposits all over the bone. hardens and make all our bones strong . so from back to ear each is affected. less breakage more stiffness and bone pains. so good news you will stay tall and straight and bone heal quikly, but same disease enlarges your joints so carpel syndrome and pinched nerves and hearing loss.my dad had a stapes etoctomy to replace the small bone in the ear so he now gotten some of his hearing back. If you were wondering why the yellow teeth and spots on the skin, yep its calcium again, leaving deposts so this spots will glow under a blue light. teeth stay nice and strong but calicum is yellow in color so yellow teeth are natural for us. geneologist able to trace this geneatic trait to a small area between austria and hungery.so while all many shrink in our old age , you will stand tall be it bless or a curse stay strong.your truely prizm Do you have it too?? I have this rare bone disease, diagnosed years ago when doctors thought I had bone cancer. They say there are no symptoms of this disease but I seem to heal much slower when I injure muscles or ligaments that attach to a bone. I also have chronic muscle and bone pain and I have severe back pain and vertebrae that will not stay alligned. This is a very rare bone disease and I was just wondering if anyone else had this and if you did, are you having any problems? I will be surprized and overjoyed to hear from you if you have received this diagnosis. This can also be referred to as "spotted bone disease".
    Anonymous 42789 Replies Flag this Response
  • I have this too & so does some of my family. A lot of my family does not suffer like I do with it. I was diagnosed with it when I was in middle school and I am 25 now. I went to wet n'wild and when I got off the bus to go home, I could not walk. That is when they told me what was wrong. I get pain in my feet soo much. The doctors always xray them and notice how much I have them. My doctors call them white spots. They say that there is nothing anyone could do,Just stay active and work through the pain. Has anyone found a way to make the pain be less painful?
    Anonymous 42789 Replies Flag this Response
  • Hello. I was born with it, it is a genetic disease.or so I was told and is rare. As for pain, YES there is but is unknown if it is from osteopikilosis or from the other conditions that go along with it. I can tell you that only 1 doctor that I have come across even knows what it is. as for the last one I injured my wrist and when they xrayed my wrist it freaked the doctor out and she called someone else and was going to sugest another specialist when I informed her that it was osteopoikilosis. Which she quickly then looked up on the internet and stated yup that is what it looks like. Most doctors don't have a clue and only go on what little there is on the web. Because I have lived with it my whole life and when you tell the doctors that you have pain and get YOUR TOO YOUNG TO HAVE PAIN you just live with it and take lots of asprin. So sorry for those who suffer from this. May you all be blessed.
    lbur102123 2 Replies Flag this Response
  • Hello, Yes there is pain for some, but it is unclear if it is from osteo or the problems that goes along with it. I have had it all my life and lived with pain, My mother, grandmother, and brother all have this disorder. As fpr the pain I have only found one doctor that even has heard of it. just 2 weeks ago I hurt my wrist and went to the doctor and she freaked when she saw the xrays and kept saying did you see your xray? I told her what it was and she left to look it up on the internet came back and said yup that is what it is.I have had pain all of my life and have been told your too young. Asprin will be your best friend and most times your friend will not help you much. So sorry to hear all the stories. I was told that it was rare, evidently not that rare. take care all and God bless.
    lbur102123 2 Replies Flag this Response
  • I have osteopoikilosis, and tbh it sucks! I have had for it quite a long time. Now it is a rare bone disease and as far as doctors go they no as much about it as we do. Its quite frustrating having deal with this and be made to believe that its nothing really to worry about. I have extreme pain at times almost to the point where it causes RLS and keeps me up all night. For those who also experience pain im sure you know what iam talking about. I have them on my legs, and the worst is my pelvis and lower spine. In which i have innumerable amount. There is nothing we can do about i have came to terms with that but, dont get pushed aside when it comes down to finding answers or better yet getting pain management. Right now i take prescribed muscle relaxers and a prescribed narcotic if you will. As much as i hate taking them because of the bad stigma, if you only take them as needed it goes a long way in helping to make it comfortable to a degree, i believe there is no worse pain than bone pain. So the medications wont cure you of your ills, but when needed at the worst of times you do find some relief. Asprin and all that dont work for me and never has, but to each is own, i know it says like anywhere between 15/25% feel pain. I would like to think like myself that A, we live with the pain because of just normal **** or what have you, B, its only a matter of time before you do. So i would prepare for it and not be surprised by it. Do holistic treatments, like hot baths, heat packs and ice , and in some cases very sparringly use meds to help deal with it. But if you have it and u feel pain, report it, that would be my best guess that the numbers r so low because of that reason. If the numbers were higher than im sure with no doubt in my mind we could and would have more research done to get better answers then what they know and give us already.
    Marshallb1 1 Replies
    • October 30, 2012
    • 02:42 PM
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  • I have this rare bone disorder, I am male,45 years old and only found out a few years ago when I was getting shoulder pain and they thought it was frozen shoulder. they did an Xray and found my bones had an unusual appearance, honeycomb appearance, at first they thought the worst CANCER, but after a specialist took a look he knew what it was and diagnosed Osteopoikilosis. I get extreme pain all over my body now, just seems to be getting worse, I can't walk far without it hurting so much.
    Dudedancer 1 Replies
    • February 6, 2014
    • 11:51 PM
    • 0
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  • I have this rare bone disorder, I am male,45 years old and only found out a few years ago when I was getting shoulder pain and they thought it was frozen shoulder. they did an Xray and found my bones had an unusual appearance, honeycomb appearance, at first they thought the worst CANCER, but after a specialist took a look he knew what it was and diagnosed Osteopoikilosis. I get extreme pain all over my body now, just seems to be getting worse, I can't walk far without it hurting so much.
    Dudedancer 1 Replies
    • February 6, 2014
    • 11:53 PM
    • 0
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  • I have this rare bone disorder, I am male,45 years old and only found out a few years ago when I was getting shoulder pain and they thought it was frozen shoulder. they did an Xray and found my bones had an unusual appearance, honeycomb appearance, at first they thought the worst CANCER, but after a specialist took a look he knew what it was and diagnosed Osteopoikilosis. I get extreme pain all over my body now, just seems to be getting worse, I can't walk far without it hurting so much.
    Dudedancer 1 Replies
    • February 6, 2014
    • 11:58 PM
    • 0
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  • Hello! I posted before. I mentioned I found out in middle school. I wanted to come back and update.My sister had has surgery to remove the bone spurs off her shoulder, within the 6 months after the surgery they grew back. Mine has flared up again causing a lot of pain again. I am being sent to a bone specialist in LA.My sister and I would like to me a group on fb about Osteopoikilosis and would love if you all would join.we could keep each other updated. I will post what the specialist tells me.
    Anonymous 1 Replies
    • February 12, 2014
    • 05:18 AM
    • 0
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  • If you are interested in joining the fb group, please add me and write me.https://www.facebook.com/tammy.leblancjensen . My sister and I plan on learning everything we can on this and teach others.
    Anonymous 1 Replies
    • February 12, 2014
    • 05:23 AM
    • 0
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  • My daughter has been crated today and told she has this too.x
    Anonymous 1 Replies
    • September 30, 2014
    • 09:01 PM
    • 0
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  • I myself have this disease...i got from my biological father as a hereditary disease...found out when I was 18 that I had it when I went to the doctor because of pain I had deep in my leg, needless to say I am always in pain because of it
    Anonymous 1 Replies Flag this Response
  • My granddaughter has been diagnosed with it she is only 7
    Anonymous 1 Replies Flag this Response
  • I was diagnose with this from my MRI last week because of shoulder pain I was having they said I have the following osteopathia striata and osteopoikilosis. I think back when I was 18 and in the Army they found this out and told me nothing to worry about at that time and know I am 52. The Doctor does not have any reason why I am having pain in my shoulder but said he wants to do an injection on it, we will see if that helps.
    Anonymous 1 Replies
    • November 7, 2015
    • 00:08 AM
    • 0
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  • My daughter was diagnosed with it too.
    Anonymous 1 Replies
    • September 9, 2016
    • 00:03 AM
    • 0
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  • I have it. over 25 years. chronic back pain!
    Anonymous 1 Replies
    • October 7, 2016
    • 10:19 AM
    • 0
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