I Have Osteopoikilosis

It's bad enough that only 1 in 50,000 people get this disease, but not only do I have it, I'm part of the 20% that have terrible pain. I fought doctors for 15 years before I had to research the evidence on my computer from MRIs, bone scans, etc... I had to look it up on the internet and shove it in my doctor's face. When you have spots all over your bones you either have cancer or this disease - HELLO!. I'm currently going to a pain treatment center in Alabama and I've only been helped for the last 5 months. I'm currently being given morphine (90mg) and hydrocodone (20mg) a day, but that's not near enough to help me. I'm not allowed to smoke pot now because of drug testing, but it was the only way that I was able to make it this long (15 years) without a doctor's help. The pain killed my 20 year computer programming career and now I make $50,000 less than I did. If medical marijuana is ever allowed in Alabama, I wouldn't have to take as much heavy narcotics and I could live a somewhat normal life. But as of right now, that's not possible. I would love to move to a state where that is legal, but what about my 75+ year old parents here in Alabama? I wish that these doctors would completely help me and these republicans in Alabama would let the democrats make it legal - I guess we'll eventually see. If you 're on Facebook, make sure and "LIKE" the Osteopoikilosis group.
PainAllOver PainAllOver
1 Response Nov 6, 2012

So here I am again, a few weeks later. I fired my pain doctor and I'm going to be seen next week by a new doctor. The meds that I previously talked about made me comfortable for pretty much 12 hours a day as long as I didn't move around much. I need 24 hours of pain relief. I've suffered with this (untreated) for over 15 years.

I have done some research on osteopoikilosis (OPK), and it seems that different people have different levels of pain and most have no pain. I will be posting more info on my research as I have the energy and time. I am a 51 year old white male. My father was very short and my mother was very tall. I am 6'1", 205 lbs. .I have always thought that my body felt like there was some kind of internal struggle with itself about growing tall or staying short. To me, I think that my lower body seems short and my upper body (above the waist) seems longer than it should be. My body feels like two continents colliding (between my stomach to my hips). I've noticed that my pain in my sacrum and hip area when medicated, stop hurting, but the pain will always go to another part of my body, particularly my fingers. I also have muscle pain in my legs a lot.

In 1997, I had a car wreck and my doctor told me that my T5 vertibrae looked like I had cancer. The whole T5 bone was a different color than all of the other vertebrae (it seems like it was black and all other bones were white - I don't know if this was a CT scan or Xray and I never got to keep a copy of it). I'm not sure if the doctor checked my lower body, but at that time, I thought that all of my pain was self inflicted from too much arrowhead hunting (my hobby that I constantly did as much as possible). I noticed that after the wreck, my body never healed - the pain in my sacrum area never went away. I had my first cancer test when this T5 thing was discovered and I was told that I was ok. My doctor said that my T5 thing was very rare and he had no idea why it was a different color. He said that it was probably too much calcium deposit or something and he said that I should live with it as long as I could (which I did) and that was a big mistake. That was 1997. Today, I'm not sure if my T5 is still showing that. I have not seen any CT scans or Xrays of it since 1997. I still haven't seen my OPK on the actual scans yet, it's like the doctors don't want me to see it or something. I will ask my next doctor to show me (next week).

Here is the results from my latest CT scan:

Bone windows demonstrate a very hetrogeneous appearance to the bone marrow with multiple patchy areas of sclerosis. Multiple sclerotic lesions are seen within the bilateral acetabuli and femurs.

Very heterogeneous bone marrow appearance throughout the axial and appendicular skeleton. There are numerous small foci of sclerotic lesions with more dense and larger sclerotic lesions along the acetabulum and femurs. This finding may represent osteopoikilosis. The appearance was similar in July of 2005, although the number has increased. Correlation with PSA and digital rectal exam are recommended as metastatic disease cannot be completely excluded, but is felt less likely. The more sclerotic appearing lesions within the pelvis appear to represent bone islands making osteopoikilosis a more likely consideration and also was seen dating back to 2005 (compared to bone scan).

So in other words, my doctors weren't bright enough to listen to what the CT scan said and they didn't investigate OPK & pain. I was checked by a cancer doctor and a proctologist. Everything was ok in those areas. I'll post more as I research this but now I have to go.

I too suffer from this disease. I would love to hear the rest of your of your story and see if we could help each other find answers.