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Rare Diseases/rare bone disease fibrous dysplasia


I was recently diagnosed with craniofacial fibrous dysplasia im 38 yrs old. I am worrried as i was miss diagnosed then shuffled off to a neurologist who is a collegue of the gp that miss diagnosed me to begin with. The neurologist sent me for a mri brain contrast why would they want to do a brain contrast when the problem isnt with my brain itself and is with my bones ?  I feel i am getting the run around and i have not seen any doctors who specialise in fibrous dysplasia i live in NSW Australia can you plese forward some information on so i can get in contact with doctors who specialise in this field. Thankyou. Also the neurologist put me on topamax 50mg a nite just recently put me up to 100mg as i was getting facial pain.

Hi Tracy, there's not alot of doctors that specialize in this because it's pretty uncommon.  I would say try an encrinologist.  Sometimes they will put you on different medications to help the symptoms, such as pain management, hormone medications, ect.  The MRI was probably to check your skull because the disease can distort the skull.  I would ask the doctor to get a referral to an endocrinologist, the neurologist is a good part of the team but hopefully he is knowledgeable about the condition.  If the bones distort or break then a surgeon is added to the team but the endo doctor should also be part of the team.

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Tina Budde


I can help on all aspects of the condition, treatment, support. I cannot diagnose but only give my personal expertise, and refer you to others who can help. I am in touch with doctors, therapists, and professionals on a regular basis. I can help with disability issues pertaining to lymphedema or cancer.


15 year cancer survivor, Lymphland International Lymphedema Online (LILO)Support group owner, Owner of website, former writer for Butterfly Gazette, Editor for ELymphNotes online lymphedema magazine, patient and advocate for 16 years, Yahoo answers advanced level answerer.

Lymphland Support Group Owner, website owner, American Society of Lymphology member, ELymphNotes forums coordinator; writer; and editor; member of many online support groups. Rainbow Bridge Pet Loss Grief Counselor, former bank loan rep, pharmacy ass't

ELymphNotes Lymphedema Magazine, Butterfly Gazette, many other health oriented websites and newspapers.

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