Rare Bone Disease: Hello friends and... - Bone Health and O...

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Rare Bone Disease

autoimmunemystery•

8 years ago•5 Replies

Hello friends and encouragers.

So I have a super rare bone disease. Here is some back story. Looking to connect some dots maybe?

both of my parents have RA, dad also colon cancer, mother sjogren's.

my rf in that last 5 years has gone 4 to 8 to 10. I know it is not much. But it is an increase in any way. Here is a brief on my craziness. If you take the time to read and reply alone, I can not thank you enough.

I have a rare bone disease called Kienbock's. Wondering if anyone has been diagnosed with this along with vascultis or lupus OR any other autoimmune disorder. Kienbocks is avascular necrosis of the lunate bone, a carpal bone making up the joint of your wrist. Necrosis is death by loss of blood flow to bone. Even more rare about this disease- I have the condition in both wrists and it was not caused by injury, which in most patients diagnosed, it is work or injury related in the dominate wrist. This has led me to believe it may be autoimmune related or vascular/peripheral related. I have many symptoms of lupus or a GI auto immune disease and they have steadily worsened.Finally in to see to specialist in the autoimmune/mystery disease world. Would love to chat wit you all in the mean time. I am a young mother that needs answers. Thank you! - Leah

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5 Replies

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jsax7 years ago

Hello, how are you doing with your Kienbock’s? I know this was posted a while ago, but would love to chat about how you are managing it.

I was just diagnosed a few weeks ago and am going to have either radial shortening, bone graft revascularization or partial fusion. I am a 32 year old woman in the US.

I do not have lupus but have read that lupus is belived to put people at higher risk for kienbock’s.

Kbbj• in reply tojsax7 years ago

Hello Jsax, I too am a 32 yr old female just diagnosed with kienbocks. Do you mind if I ask your symptoms and time frame and stage you are?

jsax• in reply toKbbj7 years ago

Hi Kbbj -- sorry for the slow response. I was diagnosed with carpal tunnel for about two years although, atypical for CT, the onset was sudden (overnight) and nerve conduction test was normal. I could not put my hand flat on the floor, like in a push up position, and wrist felt tight all of the time - near the end, I struggled to pick up a coffee mug. By the time the incorrect diagnosis of carpal tunnel was properly changed to kienbocks, I was very late stage. I chose to have revasularization using tissue (cartilage and vasculature) from my Trochlea Flap (knee). It has been about three months since the surgery and am waiting to hear on results.

How about you? What stage are you and how are you choosing to proceed?

Kbbj• in reply tojsax7 years ago

Hi there! Thanks for getting back to me. So sorry you went so long ended with the late stage. I had revascularization and bone graft and also a radial shortening 4 weeks ago. They put a cast on 2.5 weeks ago which we take off this week and xray to check progress. How has your pain level been and use of your hand now?

4wolf7 years ago

I have Kienbocks and Lupus. With my lupus, I have asthma, migraines, arthritis, muscle and tendon pain, thyroid problems, butterfly and other rashes, and some other stuff, possibly including anti-cardiolipin antibodies. My surgeon could not say whether or not those antibodies, which can cause blood clots, had anything to do with the loss of circulation to the lunate bone. I had surgery, Proximal Row Carpectomy, to remove the lunate bone and one bone on each side of lunate. I was lucky enough to have pain relief from the surgery and can still move the wrist, though reduced range of motion. Could have come out of the surgery with a rod preventing movement of the wrist, but was lucky and didn’t have to do that. It still has stiffness and soreness, but I can use it for most things. (The surgeon said I can do anything with it, but I wouldn’t go that far).

Hope they find out soon if there is a relationship between Kienbocks and autoimmune disease. It is certainly suspicious the way things overlap.

I’m a grandmother also, and have been diagnosed with lupus since 1991.