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This is an extremely rare syndrome. I'm posting a lot here hoping to help someone else down the road or catch someone's attention who's had some success with this. It took months to get a diagnosis and I'm not looking forward to the next six months based on the last year.

Last Christmas (12/2009) my right knee began feeling stiff. Stiffness was quickly followed by pain and swelling that became so unbearable I could no longer walk on that leg. X-rays were negative...an MRI was ordered and I was diagnosed with a stress fracture, or "subchondral fracture" (in absence of having had any stress). My femur above the knee was "lit up" on the MRI. I was ordered off my leg for 2 weeks (crutches and wheelchair) followed by 4 weeks of assisted walking with a cane. The pain felt like a nail had been driven into the inside edge of my knee joint. My whole leg ached...muscles included. After 8 weeks I started feeling better and started to resume normal activity.

I then moved to the west coast...so new doctors and medical team.

Just as things seemed to be getting better in March, I noticed pain starting to develop in my right hip (same leg). After a week the pain was so great that I could no longer walk and went to the ER. I knew it was the same problem...it felt the same, but the doctor laughed at me. "If you have a stress fracture in your hip you'd collapse in pain". That's kind of why I was in the ER...but you can't argue with the logic that you can't get two stress fractures in the same bone without trauma. He gave me a prescription for the pain and told me to see a GP in a month if it didn't improve. After a week I couldn't take the pain with the prescription NSAID and started the medical process anew.

X-rays were negative...MRI revealed a subchondral fracture...possibly early-stage AVN or another stress fracture. The femoral head was "lit up" on the MRI. I was moved to narcotics for pain relief in case NSAIDs might affect the bone healing process (I was taking double doses of naproxen this whole time not knowing that NSAIDS can retard bone healing). I started physical therapy...both bouts were so close together that they resulted in serious atrophy and muscle weakness. I lost about 20 pounds and had difficulty walking up and down stairs.

A bone scan was done (6/2010) and I had osteopenia in the affected hip and normal bone density in the left hip/femur. The radiologist opinion was that occurrence in the left leg was extremely unlikely.

I also had a battery of blood work done to rule out other causes of osteopenia. The only semi-abnormal result was low-normal testosterone (T) levels.

Things continued to improve week by week. I ended physical therapy in August and started working with a physical trainer who is also a physical therapist. Things were still a little stiff/dodgy in knee and hip...but I was healing well, increasing strength and getting into very good physical condition. I regained the strength in my legs and lost another 10 pounds. I was no longer "overweight" for the first time in a decade.

About 4 weeks ago (11/2010) a follow-up blood test was done and my T levels were now normal for my age. The week after the test I noticed my left (other leg) knee starting to feel stiff. That led to escalating pain and now my left knee is swollen and painful preventing weight bearing on my left leg. My right leg is fine...just like the first time, my whole leg aches and my knee is swollen. I strongly believe this will also lead to hip involvement...I can feel it in the radiating pain down my leg.

I get the results of my MRI and test results from fluid taken off the knee tomorrow. The orthopedist needs to rule out other causes of course, but we don't expect any surprises.

From what I can tell about this "syndrome" it will run its course. I'm thankful it hasn't affected my ankles or feet...it's incredibly rare and I'm writing on this board to bring attention to it...and provide something for someone to compare themselves to if they have similar symptoms. I can understand why it is frequently misdiagnosed. I am the only case UCSF has seen...

The key characteristics are that one joint is affected at a time. It rarely shows on an X-ray but does show as BME, stress fracture, subchondral fracture or early avascular necrosis on MRI. Bone scans show osteopenia in the area affected but other bones can be normal. It's a diagnosis by exclusion...there are many things that can cause osteopenia...so other causes have to be ruled out. There are at least 21 different problems/ailments that can cause early osteopenia in men or recurrent stress fractures.

Sometimes it stops after one joint (transient osteoporosis)...sometimes it "migrates" from joint to joint...usually to the nearest unaffected joint. I read a case study about a woman who had every joint affected in turn...ankles, knees and hips over a 15 month period. It never goes back to the same joint in the same place a second time...I read case studies of people who had it affect one side of the knee only to affect the opposite condyle later...but never the same location twice. Two incidents in the same joint were extremely rare. It runs its course in 6-18 months. It mostly affects men in their 40s and 50s (2/3s) and women in their 3rd trimester. If a woman is affected, it can last up to a year postpartum. It clears up on its own after 4-12 weeks. I didn't see any case of a reported full fracture or collapse of the bone even though it is in a weakened state.

I thought the problem might be hormonal -- based on the population affected...and because I had low T levels during the first bout. I attacked this with nutrition and exercise thinking that if I could increase my hormone levels naturally I would avert another bout. That didn't work out for me. I am planning to start physical therapy right away...before my muscles atrophy and I lose range of motion again.

I do not plan to take any prescription drugs (bisphosphonates being the most commonly prescribed) nor any surgery (decompression being the most common procedure). From the case studies, the recovery with drugs and/or surgery is as long or longer than conservative treatment (do nothing). It's hard to abide that when you're in so much pain...I just have to focus on getting through this painful phase. The orthopedist injected cortisone in the joint...that took the edge off the pain in the joint for about a week...but didn't reduce the more serious pain felt on weight bearing.

If anyone has had experience with this or has been able to alter the outcome, I'd love to hear from you.





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