Good morning, I was wondering if anyone has had any issues with their bones. I do not have the brittle bone disease but have had bone marrow tumors. The doctors say they are by in large non-cancerous but depending on where they are growing need to be removed. I have had three usually in the long bones in the arms. Of course no one doctor is going to commit and say this could be another symptom brought on by sjogrens but I have to dissagree. They are I believe called "echondromas" they according to my doc. do not know why they form but usually do not cause any symptoms untill they are big enough to actually push against the bone. My first one was found by accident when I thought I had hurt my shoulder and upon looking at an ex-ray the doc. saw something. To remove it the bone is surgically broken then they scoop out the tumor and reset your bone. Mine was in my arm between my shoulder and my elbow. I was told if left alone the tumor would grow and basically blow out the bone in which it is growing. I have been told that if you have one you will most likely develop another. True enough I am now facing my third. I have also been told this is some sort of autoimmune problem because your body grows them by thinking there is a problem or infection so it tries to destroy it causing a growth. I find it hard to believe that with all the other symptoms that sjogrens comes with that this would not be another one of them. There are soo many that the doctors either by choice or lack of knowledge know of all the ramifications of this disease. Just another one of sjogrens wonderful mysteries. Would be interested in hearing if anyone aslo has dealt with this. Thanks
Oh sadymay, so sorry to hear that you have to go through this! I have never heard of this in conjunction with SS, BUT there are many things I was unaware of being related to SS.
My spinal MRIs show cysts on the spinal cord, though small at present, could become problematic, but these are no where near these tumors.
The only tumors I have had were fiberiod tumors discovered when I had the hyst.
Stay strong, girlfriend, we're here if you need to lean on us!
Wishing you well,
SK