Hi, my name is Clair and i live in Wales, UK.
I was diagnosed with FD two years ago after suffering many years of pain to which my GP said was "All in my head and nothing more than a slipped disc"!
Luckily my husband, children and i moved to Wales where i registered with a brilliant GP who was sympathetic and who along with the Physiothearopist sent me for an x-ray of my Pelvis and Hip. It was then that my calcified cystic lessions were found in my the Ilium of my Pelvis. I was refered to an Orthapaedic Surgeon who i didn't see for seven months after the referal and only because i collapsed with the pain. I was sent for a CT scan and an MRI which comfirmed the FD. I am now being seen by an Orphapaedic Oncologist who told me he has come across "Thousands" of FD sufferers, though the other staff there (Radiograther, nurses and even the surgeons secretary) say that they have never come across it in the Pelvis and they are not really sure how to deal with it.
I am in so much pain around my pelvis,back, hip and femur that i now have to use crutchess and a wheelchair. My GP says the cysts are calcified and have both formed in to one large one. I take morphine along with other pain relief because if i didn't i think the pain would send me insane.
I have been searching the net to find a Doctor who i could email and ask for his advice, this being because there are not enough sufferers with FD to warrant this bone disease being researched.
I would really appreciate any replys or advice

If you go to the National Institute of Health website and dig around you will find different studies they are doing and there will be a contact email for the doctor. I have corresponded with his nurses. They have been quite helpful. I cant remember his exact name but I think it is Michael something.
I would love to meet the thousands of FD patients your doctor has had!
These docs are unbelievable!!
Keep us posted !
Anne

Thanks for your reply Anne. It is very difficult trying to find any Docs that know what they are talking about when it comes to FD. I haven't had a biopsy yet and every time i do go to see my "specialist" he says We'll try this first and if it doesn't work then we will book you in for a biopsy but he never does. His secratery told my husband that it is very rare to have it in the ilium and that i'm their first patient with it.
As you said that you would like to meet the other thousands of people with this bone disease i wondered if you have any idea of how many people around the globe roughly have this bone disease?
I am so glad you replied because when i do go back i am going to ask him why he lied and does he actually know what he is doing as he was not the original specialist that i was suppose to see on my first visit. The origianal doctor went home because it took so long for the xrays to be taken, even though he had booked me in for it!
I will let you know what he has to say for himself after my next appointment whenever that may be.

Clair, I would insist on a biopsy! Has anyone done a biopsy before? I was under the impression that you had to have a biopsy to confirm FD. This really is hard because it seems that no one really knows what they are talking about.
I went to a specialist here in the States at the Mayo Clinic. He was as clueless as the rest of them.
I have no idea how many people have FD. No one I have ever told has heard of it. Including most other types of doctors.
I can not possibly imagine that your doc has seen a thousand FD cases. Actually, I find that quite funny.
Let me know what happens.
Dont let them push you around. It is YOUR body!!
Anne

Hi Anne.
Every time we go to see the specialist he says "we'll try this first and if it hasn't worked by the time you return to see me we will do a biopsy" this has now been said on a number of ocassions but has not happened.
When my next appointment comes i am going to demand a biopsy and i will also arm myself with a number of questions to ask him and if he doesn't give me the same answers that i have written down then my husband is going to demand that i see a doctor who does konw what they are talking about. I will keep you informed every step of the way.
I hope you don't mind me asking, which of your bones are effected?
I think my femur may be effected too as when i went for another xray on my hip the report said that i have an increased density in the soft tissue in the lateral aspect of the proximal third of the femur and that these findings are similar to those in my pelvis. As time has gone on the pain in my femur has got alot worse as has the pain in my hip which is under constant pressure
. My hubby says that if the femur is looking the same as my pelvis then i must have it there.
Anyway i really appreciate you replying as i know feel i am no longer alone.
Thankyou.
Clair :

Clair,
Hi! Sorry been away from the boards for awhile.
I went through the clinical trial for PFD at NIH. The doctor's name is Michael Collins and he is the most wonderful physician I have ever met. I ultimately did not have PFD, but another more rare bone tumor disease. They have done several clinical trials at NIH and are the most knowledgeable about the tumors and what treatments have worked.
One of things I have tried based on Dr. Collins advice is Aredia (bisphosphonate) infusions. VERY painful and although he has seen much success with it (less pain and tumor growth halted), I had no success.
Look in the archives on the board for mine and other's journeys with FD.
Wishing you all the best!
hrtofluv

Bumping up for Clair.

Hello annemy & hrtofluv & all.
Hope you are all doing as well a can be and sorry for being away for so long.
Well have had my biospsy and feel like i've been kicked by horse!
After a couple of months of my mri's & xrays & bone scans being somewhere in wales (idiot doctor from aberystwyth had them and wouldn't return them) finaly went back to see specialist and for nother mri and it was actualy decided it was not a trapped nerve in my back and that it was the fd. Anyway booked me in for the biopsy which was very amazed that it i would go in that sunday and have it done on the monday. results should be through next week so hopefuly will recieve nother appointment. heard nurses talking about me and gritty fibroused tissue so its definate, hoped in some way they might say not its not fb its just the tumour but no such luck. i must say though they looked after me very well and was grateful for all their care but not the amount of painrelief and other meds they sent me home with.
Need to ask couple of questions. firstly how long does it take usually for biopsy site to heal and also did any of you need stitches. Nurses said not normal for stitches, also did you loose sensation in any area of skin? considering they took bone from between iliac/ilium and pubis i have loss of sensation in skin above the knee!
Thankyou for your support, it is well appreciated. Will give you an update as soon as results recieved.
Take care all.
Clair x

Clair,
Hey - so good to hear from you again. Glad you finally found a doc to stick to it until he got the answer to your problems. Hopefully, the pain will slack off soon - then you won't need the pain med anymore.
Well, my biopsy was in the shoulder, but I also had elbow bone grafting done at the same time. Healing took awhile, but I think I was back to work in under 2 weeks. I did have stitches though (1 or 2) that had to be removed. But to my memory (not so good) I don't remember losing sensation in the skin - other than pain.
Hope everything continues well for you - let me know!
hrtofluv (Melinda)