I'm glad you're persuing this with a specialist. You signature doesn't list Prednisone...were you ever on it? There is alot of misinformation out there about osteonecrosis (ON) and I believe wholeheartedly that there are more people walking around with this than many people realize. It is often misdiagnosed or looked over for many years because an MRI wasn't done to detect it in the early stages.
I don't know if you've read any of my previous posts, but in a nutshell, here is what happened with my daughter: Colitis spread through her with a fury...from beginning to end, 3 months on Pred and surgery for the jpouch on in a span of 4 months. Digestively she's doing great...a year later her knee became swollen/painful with a grinding popping sound and after x-rays (whic was negative), phys therapy, and a rheumatologist who wisely suggested an MRI "just to rule out anything mechanical" discovered "bone infarcts" on the MRI. These are areas of dead bone. After searching for treatment, we found a specialist who suggested aggressive MRI of all joints. At the time, only her knee and right elbow were bothering her which we thought was an extraintestinal manifestation of the UC-arthritis of some sort. Long story short, like my signature states, it's pretty much throughout her body. Many of the joints aren't symptomatic, so we still wouldn't know she has it if we hadn't done MRI's. But, we've been able to get her joints operated on to hopefully halt the progression of the disease.
I'm not saying you have it, but there are red flags in your story, ie, "..sharp stabbing pain towards the core of my right buttock...worsens throughout the night and mornings are tough...substantial grinding felt and at times even heard."
Thank you for your encouraging words. It has been incredibly difficult; you have no idea, but, we're learning to deal with this, she has a world sought after surgeon to care for her and I'm learning all I can about it so that I can be informed. There is so much misinformation like I said, that's why I spend the time responding to people who are having joint issues with a history of steroid use. That said, it is considered a rare disease and many orthos will go their entire career and not see a case nor know how to treat it properly which is why I alway suggest to people seeking treatment to find someone who specializes in this disease. I'm going to post this link for information that might be helpful; its very comprehensive: http://emedicine.medscape.com/article/386808-overview
My intention is not to scare you, only to inform so that you'll be armed with info when you see your ortho. There are cases of ON from low dose steroids and there are ON cases for no known cause (ideopathic). And from your reading you know it can not only be caused by steroids such as Prednisone, but also from trauma, scuba diving, excessive alcohol use and in the case of a study on rabbits, from intramuscular injections: http://www3.interscience.wiley.com/journal/112212938/abstract
Here is a link to a study with MS patients who received pulse treatment(s). http://www3.interscience.wiley.com/journal/118554672/abstract?CRETRY=1&SRETRY=0 One thing to keep in mind is that some people are just more susceptible to this and there are ongoing studies to figure out why. Some have a coagulation problem with their blood which makes them more susceptible.
I'm still learning about it and trying to understand the pain patterns. My daughter seems to have more pain when the weather is bad which is understandible with the drop in barametric pressure putting more force on the bones. Osteonecrosis will eventually turn into Osteoarthritis and many arthritis patients also feel more pain in their bones when the weather is bad so it makes sense. So, to answer your question, her pain does come and go. She's away at school, so I'm not really tuned into the grinding or popping sounds coming from her knees and other joints. She does get up and down out of a chair like an old woman but other times she seems ok. It is my hope that you won't need any of this info and that your MRI comes back negative..in which case, I'd seek out a rheumatologist to see if you have Rheumatoid Arthritis. Sometimes it takes multiple testing to confirm that through bloodwork.
All the best to you,
Post Edited (Buckeyeinfl) : 3/10/2009 6:14:38 PM (GMT-6)