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.
The test results came back on the knee. MRI was positive for subchondral fracture. Fluid taken from the knee was normal with moderate calcium phosphate crystals. I started physical therapy in January. The knee cleared up quicker than the first incident...I largely credit the physical therapy for that. The knee lasted from around 12/7 to late January.
The knee was followed by foot involvement. The foot wasn't as severe as the knee or hip...just sharp pain in my metatarsals that went from outside to inside, bone by bone. The last bit of pain moved down the big toe and ended about a week ago. This process went quickly and I now recall the same thing happening last year to the right foot...I wasn't aware of what was going on when it was happening and attributed the pain to weakened foot muscles.
About a week ago I started to feel muscle discomfort in my hip. That has been getting progressively worse with moderate pain on weight bearing. I am anticipating a 2-3 week downhill slide followed by 6-8 weeks recovery. I am going to try to continue physical therapy through the entire episode. I'll report back one more time at the conclusion. Once I make it through this episode with the hip, the disease will have completely run its course and I'll be one of the lucky ones to have experienced broken hips, knees and feet over an 18 month period. The only follow-up after this is a bone density scan that the orthopedist scheduled for 18 months from now (he scheduled a 2 year follow-up). I'm not sure if he'll still want to do that and at that interval given what we know now.
Other symptoms: during bone degradation I have problems with vertigo/dizziness and muscle tics. I suspect that is due to calcium and other minerals released into my blood from the demolition that is going on. These symptoms have always preceded the severe bone pain by several weeks.
Great informative post. I have had similar issues since under going hip surgery oct 2009. Transient osteporosis of the knee diagnosed by MRI in march 2010 with micro fracture. have also had lots of pain in feet one at a time which is still ongoing. Not a lot of interest from the doc's here in UK.
Hope this has run its full course for you now.
Feeble Bones, I'm so sorry to hear you're suffering with this bizarre ailment too. I'm especially disturbed that you had a micro fracture...I hadn't read that anyone actually fractured a bone in any of the case studies...though they all warned that it was a very real and possible complication.
Update...the hip turned out to be a tease and instead it went into an attack on the lateral left knee (it can hit each femoral condyle). This was the worst attack yet. I was completely immobile for 2 days and had a tough 2 weeks with it at its worst.
I read a case study that there was anecdotal evidence that a low dose of aspirin and antihistamine could avert or lessen an attack. I started taking 2 baby aspirin and antihistamine daily (over the counter...not prescription) and continued for about a month. The left hip has not yet become involved.
I am doing extremely well right now...muscle tone is coming back. My left leg is still weaker but I am riding my bike 25 miles on weekends and I can navigate stairs normally. My physical therapy ended...I've been released. I am seeing a trainer now (who has PT experience). I have a follow-up next summer for a bone-density scan. This is to ensure that bone density is normal after everything has cleared up.
My take-away from this is:
1. Physical therapy throughout the process is critical to maintain range of motion, minimize muscle atrophy, and reduce pain/discomfort.
2. Load bearing (non-impact) activities/exercise is important after the pain has subsided to restore bone density (one case study stated that patients who did not exercise post illness permanently lost bone density from this disease).
3. Be patient and let your body work through it. The prognosis for patients taking bisphosphonates, vascular dilators and surgery is no better than letting the disease run its course and all those treatments have serious possible side effects (including death).
4. Cortisone injections reduced join inflammation and pain for me. It probably didn't speed up recovery, but it did take the edge off the worst of it.
5. Be sparing on the use of NSAIDs (ibuprofen and naproxen) as they may interfere with bone healing. I believe my right hip healing was delayed because I was taking huge doses of naproxen. Take acetaminophen or narcotics (Vicodin, etc.).
6. Having a good medical team behind you is very important. I felt I got much better care in San Francisco than in Milwaukee. I had doctors I could have frank discussions with and they involved me in the decision process. This is probably the most difficult thing to change if it's not right.
Please let me know if anyone else tries antihistamine + aspirin and gets results. Maybe its a placebo effect...my osteo doctor thought it was a nutty thing to try. It may have averted a hip attack...I don't and may never know for sure.
Hi, am new here and found these forums after having been diagnosed with Migratory (transient?) osteoporosis today.
To start the story at the beginning, in late March I started to get quite acute pain in my right knee. After a few weeks and it got no better I went to see my doctor. I was very lucky (I think?) that my doctor immediately sent me for an MRI and on the recommendation of my son-in-law I made an appointment with a specialist. I was then again lucky to get a scan appointment within 2 days as a result of a cancellation. All this meant that when I saw the specialist on 2nd May, the MRI results were there.
The first thing he said to me was that we were not yet talking about a knee replacement! This was rather a shock as I was thinking it was cartilage. He said it was an osteonecrosis and showed me the lit up MRI image. He asked for X-rays which I had done the following morning and I saw the specialist for a second time the next Monday. This is normal treatment in Belgium and not the NHS! He could see nothing on the X-rays so gave his opinion that it had a good chance of curing up without intervention.
I went for the second scans last week and saw the specialist again today. In the meantime, the pain had almost gone and I have been walking quite well (did 5km on Sunday) without any affects except muscle fatigue.
I was astonished that the MRI showed a larger affected area than before. The specialist then declared that it is migratory osteoporosis and that it would certainly cure up on its own. Reading the stories here this seems to be the case except the possibility that other joints will be affected in turn.
This led me to think that 2 years ago I had a strange pain in my foot that appeared from nowhere, lasted a few weeks and then cured up without any intervention. It seems that this could also have been the same disease.
These forums are a fantastic resource and I'll shre further experiences as and when they happen. I shall keep exercising to work the bone and keep in trim. I have been advised to take vitamin D and this seems to make sense. The foot and the knee both appeared in the spring ie after the dark winter so I shall maintain a regular intake of vitamin D (monthly is advised by the specialist) and hope that it does not migrate again.
Good luck to all,
Thanks so much for posting on this condition. It's very hard to find information about this, and I am glad to see I am not alone in this awful condition. I hope you are healing and doing well.
My story: I had faint twinges of pain in February '11. It progressed to painful and a definite limp in March. In April I started using a cane and consulted the first doctor. He took an x-ray and said it was arthritis and prescribed Mobic. Mobic did not even touch the pain.
In May I consulted a second doctor and he did an MRI. By that time the pain was excruciating. He did diagnose transient osteoporosis of the hip, put me on crutches and prescribed Norco. At this time (July of '11), the excruciating pain has calmed down to just pain on a scale of 5/10 on good days. I am still on crutches.
The adjustment of having to have people do everything for you is terrible mentally, not to mention the loss of work for the past 3 months and however long in the future. Based on the limited information I have been able to find on the Internet -- and trust me, I have searched on a daily basis -- it certainly seems I should be more improved than I am. I really hope the fact that I have mild osteogenesis imperfecta does not mean that I won't improve. I definitely don't fit the profile of middle-aged men and women in their third trimester of pregnancy who get transient osteoporosis. I'm female over 40, though.
I would really like to hear if you or anyone else who has had this condition and how long you were at your worst. Any information would be greatly appreciated!
Yes, this is a really insidious disease...and there are no resources out there. UCSF said I was their first case...
So...how long did the attacks last? It's hard to say because, as you're noticing, it was by degrees. I would say the worst of the attacks started and ended within 6 weeks. I still have some joint pain and muscle atrophy even though I'm pretty much back to "normal". It was at the point that I felt like I was really improving that the next attack would occur too...it knocks you down...let's you get back up and then knocks you down again.
I looked up Norco...it is similar to what I took. I did sneak some NSAIDs on occasion when the pain was not relieved by narcotics. I recommend naproxen if you have to take anything more...just try to avoid them as they may interfere with the bone healing process.
The hip was by far the worst me. It was more painful and lasted longer than the knee joints. Your case does seem to have gone on for a long time. If it is clearing up on its own, that is the way to go...if not, then consider a vascular dilators. That seemed to be the treatment of choice when the disease gets stuck.
I read about OI...and perhaps there is a clue about the disease there...and maybe this will be more prolonged for you. I have mild scoliosis and I am double-jointed...both thought to be due to "inferior connective tissue". Please keep me up to date on things. Let me know if it progresses to another joint. You have a 50-50 chance that this will be the end of it...
Thanks so much for your quick reply. Did you have to use crutches or any type of assistance with your hip attack? Also, when your hip healed, did it do so gradually and one day you were able to walk?
I've read some cases where people say they just got up one day and were fine. No such luck here. I almost feel as if I have the same symptoms as when it first started, so I guess that's progress.
When the pain was at its worst, I was taking up to 14 Norco a day....way more than what's recommended, but I had no choice. Every 2 hours the pain would wake me up at night. I'm now down to an average of 4 pills a day, which I also think is progress.
Have any of your doctors told you what they think precipitated your attacks?
With the hip I only ever used a cane. I used crutches for the first knee attack (and probably could have/should have for subsequent attacks).
The healing was gradual. It was psychologically hard for me to feel better because the pain was still present...and I would shy from bearing weight on the affected area. Because it improves gradually, I had nothing to compare to other than yesterday. When I would get a fresh attack I would feel silly for thinking I was in pain before (not really realizing how much I had improved).
I believe the pain is caused more by the bone marrow swelling than the osteoporosis that results. Because of your OI, that dynamic might be different for you.
My doctors nor I have any idea as to cause...I scoured the Internet reading case studies and looking for clues. It defies reason...it's so bizarre people thought I was making it up
Are you taking physical therapy? That is really key to your recovery...you must keep moving your joint around (no load) so it doesn't get stiff on you. It will be difficult but you'll recover faster if you keep trying to get back on your feet.
Thanks for putting your experience into perspective. You write very well, and it makes me feel better to read your posts because they reflect a lot of what I am going through.
I have not been prescribed physical therapy. I'm up and around on crutches every day, and some days I really push it, so I might be getting enough exercise at the moment. Each appointment the new doctor takes an x-ray to make sure that "the hip hasn't collapsed." This scares me into any extensive use of the hip. I'm the second case he has seen in 26 years of practice, so I think he is feeling his way along with this also.
I am better than 30 days ago, so I really need to learn patience. This is such a sloooow recovery. I will also try some simple muscle exercises to keep from getting stiff. I think my body will tell me when it's too much. Being a Type A personality, this is very tough mentally to go from 60 miles an hour to zero.
I am, though, encouraged that you have healed. I'm so very glad for you!
Since you're thinking about self-PT...some suggestions.
1. Get a flexible tape measure (for clothing...you may already have one). Measure your thighs and calves around. It is encouraging to see a measurable difference over time. If you measure now, your're probably at your lowest point. You have nowhere to go but up.
2. Try isometric exercises as much as you can do.
3. Get someone to stretch you and rotate your leg/hip. This will be hard because it will hurt and you'll be very guarded (your muscles will clench to protect your joint). My therapist would massage my glute (lying prone) and move my bent leg back and forth. Yes, it was very uncomfortable and yes, it hurt, but you have to get back in the saddle so-to-speak. Although this will go away, you won't start to see real improvement without a little pain.
I'm not suggesting you over-do it or create too much pain...but realize it will hurt a little as you reclaim territory. Your body knows its limits. I wouldn't be overly worried about breaking a bone...your body will tell you with pain when to stop (uncomfortable = OK, painful = stop). No impact exercises...no jogging, jumping or ballet dancing
If you can't exercise one muscle group, but you can exercise another, do what you can (and don't neglect the good leg). When I started PT I couldn't do a leg raise from lying down. It hurt too much and the muscles were too weak. Start doing a standing leg raise...when you can do that in all directions, give a lying-down leg raise a try. Put weights on your ankles when you're ready. I would also move to a cane if you can handle it...there were times I couldn't go more than 50 feet at a time with the cane...but it will come back...and the cane is closer to walking than crutches. You have to put your type-A personality into gear
I would insist (if you can get it covered by insurance) on PT...if your doctor doesn't prescribe PT he's being reckless. There are several case studies that cite how important PT is in recovery. It is also cited as essential to long-term bone repair and health. People who didn't get PT and follow-up exercise were very likely to permanently lose bone mass. Because of your OI, you may be at greater risk for permanent bone mass loss than the average person.
That's very valuable advice...thank you. I have been wondering why PT wasn't prescribed. It may be because I was still in the extremely painful stage and even trying to lift my leg was impossible. I think I will talk to him about formal PT sessions at the next appointment. In the meantime, that was very generous of you to take the time to write all those instructions....very appreciated and I will definitely use them!
One more thing....thanks for the encouragement! I feel better reading your posts than when I talked to the doctor last time. This is giving me confidence to go on and be a little more proactive. I know that getting well is at least 50% in our minds, and you've given me a lot more hope. For that, I thank you!
Another thought...make sure you are properly checked by an MD for a laundry list of problems that can cause this condition (or contribute to it). This list is not an exhaustive list, but some of the more common things that can mimic/contribute to this condition are: bone cancer, some types of leukemia, pituitary, thyroid, parathyroid, hormone, Lyme disease, osteopenia, vitamin D deficiency/absorption, calcium deficiency/absorption, kidney function, liver function, bone infection, injury, pseudo-gout, gout, rheumatism, ALS, MS, lupus, and arthritis.
Also, it is important to differentiate between TO and AVN. I assume your doctor can see the difference on MRI. They look very similar and "early AVN" is most often the initial diagnosis or wrong diagnosis. Collapse of the femoral head is a possible complication of AVN. I've not read of any cases where this has occurred to someone with TO (I have seen/heard of people getting a micro fracture...[see feeble bones post in this thread]...but this appears to be very rare). If your doctor is checking you for a collapsed femoral head, you may want to ask him if he is sure you have TO versus AVN. TO is very rare, so he may be uncertain of the diagnosis...and a second opinion (at least to look at the MRI) may be in order.
Regarding PT...I highly recommend PT regardless of stage you're in. When I was in pain, and couldn't exercise, the therapist simply worked on range of motion. Electrical stimulation, ice/heat*, ultrasound and massage were helpful in calming down the pain. Just because you're in PT doesn't mean they'll make you do jumping jacks
* there is some thought that heat should be used instead of ice...I didn't notice a difference.
Yes, I have seen all of those underlying conditions as being a possible explanation for TO. I'm definitely guilty of a couple of those, although am being treated. It seems like most of the explanations come from overseas, interestingly enough.
At the first meeting with the second doctor who diagnosed TO, he initially thought it may be avascular necrosis. After the MRI, which was read by the radiologist, he came in and said "he agreed with the diagnosis of TO as made by the radiologist and was very glad to see it wasn't avascular necrosis." So I feel confident that the two of them agree on that, and I am also happy it isn't that.
I am also upping my intake of Vitamin D, MK-7, Osteo-Biflex and Calcium. I can't help but think additional supplements can help. MK-7 was a new one to me, but apparently it's the new Vitamin D and if you research it, you will see some interesting results.
I have been trying to find the correlation between middle-aged men and women in their third trimester of pregnancy (the typical profile of this disease). I know there is quite a calcium demand on the mother at that time, but it's a mystery to me as to how that relates to middle-aged men. If you have found that answer, please post....