Hi,
I am Natalie a 29 y/o mom. I have just been diagnosed with Fibrous Dysplasia. I have been told that this is very rare for my case. It was found in the left portion of my skull. I have just been reffered to a neuro surgeon. I really have no idea what to expect here. I have been having extreme back pain close to my scarum and numbness, burning, pins & needles, with numbness that wraps around my hips. The pain stabbing pain and stiffness is in my back lower. I am wondering if some how this diagnosis may have something to do with my back pain. If I had not had a bone scan for my back Also a full body one) I would never have know I had this. It was confirmed by CT & MRI. I do get headaches and pressure feeling behind my left eye, but never anything that would make me think I needed to see a doctor. Well, I am new to all this and would greatly appreciate as much FYI as I can get.

I also have a disease called PCOS Poly cyctic ovarian syndrome. It is an insulin restiant disease with some hormone problems. One of which is I have to much testosterone. Hmm wonder if this is all related. So many questions.

Froggy ...Hun your a still a baby, I am sorry you have to be going through this. My prayers are with you hun!
Natalie

Hi Natalie,
Sorry you are having to seek support online, as did the rest of us. FD of the skull is not fun (I have a friend with it). It will need to be watched closely. It would be best to follow up with an ortho surgeon or and ortho oncologist (even though its benign they still treat FD) that has experience with FD patients. You can look up FD or MAS support online to find websites that have other people with the disease.
If you had the full radioactive bone scan (not the DEXA scan), then you can be reassured that it is only in your skull. Otherwise, you would have looked like a lighted Christmas tree on the scan. I actually got to see mine, although my diagnosis has been changed - so not sure how an FD scan looks. The radiologist and local ortho thought for sure I had FD for over 6 years, so I would just assume it would look the same. Did the bone scan, MRI, CT show anything in your back at all? A herniated disc, compressed nerve, DDD, or anything?? With your description sounds like a nerve is definately involved somehow.
Not sure about the PCOS - was always told that extra estrogen would make the tumors grow - so I never took BCP and was actually told not to get pg - but I did anyway and would never change it - have 2 precious children. But my DH did get fixed so that we never have to worry again.
Any chance you have any endocrine issues?
Hope you find support from the ones on here already diagnosed.
Hrtofluv

Bumping up for Clair.