FD despreate for answers!!! - Bone Disorders Message Board

AmySLE · 08-07-2005, 02:27 PM

Hello to all of you once again. My sister was dx. with FD at the age of 7 by the age of 11 they had done surgery to remove the one tumor. She is now 33 years old and has a recurrence of the same tumor along with another tumor in the same bone. We live in the Detroit Michigan area and are having a very hard time finding a Dr. who knows what they are dealing with. The tumor has enveloped most of the bone in her lower right leg and has now limited her to a wheelchair, as she is no longer able to bear her own weight. The research that I have done suggests that biphosphate medication may help to control further growth of the tumors. Have any of you had any experince with this? Any direction or information as to where to get the medical attention that she needs would be helpfull. We are desprate for some answers at this point. Over the last twenty years we have found out that she has some thyroid problems, and diabetes, as well as endometriosis, which from what we can tell may all be linked to the FD; is this the way this particular disease usually acts? Thank you all again for taking the time to read this lenghty post and any info you can give us would be great.

annemv · 08-08-2005, 08:31 AM

Hello,
Do you have some type of medical school or research center in Detroit?
I called the National Institutes of Health and they sent me referrals of dr's close to me. I still had to leave the state because there weren't any in my state. But, I didn't have to go far. You can find their contact info on the net.
Even though most drs probably would not agree with me(what's new?), I believe that FD has everything to do with hormones. I have hormonal issues, and it seems like most people with FD end up having them.
Let me know if there is any way I can help.
Anne

AmySLE · 08-08-2005, 12:12 PM

Thank you for the suggestion we have sent them a letter and are waiting to hear back. Hopefully they can help.

Clair1971 · 08-11-2005, 11:45 AM

Hi Amysle.
I'm sorry I have taken so long to post a reply but anyway I have some info for you.
I too suffer from Fibrous Dysplasia but unlike your sister was not diagnosed with with it untill nearly four years ago due to uncaring parents.
The doctors do say I had classical symptoms as a child!
Mine is actually in my ilium/ilius (pelvic bone) along with the classical tumours. I think you normally have one tumour in the bone affected though i'm not completely sure about this and mine have now amalgimated to one.
Has your sisters physician told her which varient of the FD she has?
I will explain to you the differant veriants and will come back to you in a couple of days to give you the web address for the Fibrous Dysplasia Support Group.
There seems to be a common pattern with FD regarding symptoms and pain in childhood, then it lays dormant untill sufferers reach their 30's to which then the pain and symptoms come back with a vengence.

Monototic Fibrous Dysplasia (FD) is most commonly a benign bone lession composed of disorganized fibrous connective tissue interspersed with spicules of immature woven bone & cartilagenous tissue. The majority of these patients present with single or monostotic lesions. A smaller percentage present as polyostotic lesions and a subset of these are in context of the MAS (McCune-Albright syndrome).

Polyostotic FD can often be seen in a plain x-ray, this is how mine were detected as the pain just grew progessively worse and I was sent for an x-ray before physio one day.
More bones are involved and the normal bone and hematopoietic marrow are replaced by abnormal osteogenic tissue which features abnormal bone trabeculae.

With McCune-Albright syndrome it is a non-inherited' genetic disorder. It's symptoms consist of precocious puberty, cafe au lait skin pigmentation, polyostotic fibrous dysplasia of the bone. Also it has been found that a number of other tissues could be involved, these being: Thyroid, Adrenal & various pituitary cell populations including growth hormone secreting somatotroph. Besides the endorcine tissues the liver, heart and spleen have also found to be affected.

Your sister really needs to find an orthopeadic surgeon that has experience with Fibrous Dysplasia. I live in England and as you are probably aware our healthcare is differant to yours. We are automaticaly refered to an othopaedic surgeon though, I had to hunt for an Orhtopaedic oncologist surgeon that knew how to deal with FD. I didn't have much confidence at first, he tried to rule out any other bone diseases but has his hands full with me as I seem to be the only person he has dealt with with the disease in my pelvis. I do have one leg shorter than the other but my shoes compensate for this. I also have thickening of the cortex in my left femur and an extremely painful area in my ribs. I have scoliosis of the spine which may be from the involvement of the pelvis or it could mean I have FD of the spine.

Your sister really needs to go onto a search engine and type in Fibrous Dysplasia and related bone diseases. She will find there are a good few sites that will help her understand the disease. She will also find the FD Support group which she will be able to join and recieve so much imput that she is no longer in the dark.
She also needs to see if she has any other symptoms that may mean her hormones are involved.
I started my periods very young and have severe pigmentation on one side of my face (cafe au lait spots) . My glands are continuely swollen in my throat and am of very short stature. These all add up.

I do hope I have been some help to you. Do go to a search engine and get some imput from there as it is amazing what you will find. It opened my husbands eyes as to how complex these bone diseases can be.

I will find the web address for FD Support and will post it in a few days.
Take Care.
Clair

AmySLE · 08-12-2005, 06:28 AM

At this point the doctors have not said which type of FD she has. Although the research we have done points to Albright's cuz we know that she is diabetic and she has also be dx. with Hoshimoto's which effects the thyroid, she doesn't have the cafe au'lait spots, but she does have severe endometrious. She has been sick for a long time I can't believe they have never put the peices of this puzzle together before now; and now that we have they are trying to tell us we are crazy. Which if you ask me is what they do when they are faced with something they don't know or understand. Thank you so much Clair for the information. We laugh that our genetic pool is really a swamp but the more we learn the more true it is. I find comfort knowing that we aren't alone and that we are not crazy!!!!!

Thank you so much I will post again as new info develops.

Amy