I suspect Forteo skews the testing done in their research lab. I was told to stop all calcium intake about 10 days, maybe 2 weeks before the testing was done.

Testing is not done in the initial visit; the first visit is an interview. I had to wait nearly a month before I could even have the extensive testing done that he ordered. The morning after the 24 hour urine test was completed, I spent almost 5 hours there in testing, presumbly for the calcium load.

I assumed the calcium restriction was so that he could tell from baseline testing what was going on, prior to making a treatment plan.

Lab testing that was ordered included: 24 hr urine chemistries and bone turnover markers, fasting blood, PTH, BMD, 1,25-(OH)2D, 25 OH-Vitamin D tests, fasting urine Ca:Cr ratio and a 1g oral calcium load to assess the degree of calcium mobilization from the bone and intestinal calcium absorption. I don't even know what most of this is.

Bone density testing is also ordered. He prefers to compare results from the same facility.

I reminded him of my friend's problem in my visit with him and he said he remembered this. He had told me he felt he could help her, although I cannot recall the exact words. Perhaps at that time he was not aware of the cement or glue problems.

Silverlady,

I hope you appointment goes well today with the new ortho doc. Yes, PLEASE ask about the sacral and pelvic issues. I know there all kinds of blocks that can be done as well. But I am not sure if the docs would want to do that because of the osteoporosis. And it may be that you have to address one issue at a time. I had to. But please report back as to what the new doc has to say. I wish you well.

Billye, I agree with advice that you see a spine surgeon. This is there area of expertise.

Hi Billye

Sorry I haven't contributed earlier....I am still trying to get my own biopsy results!!! I am very irritated at this point, as I have several issues and am sick. And we had another serious medical emergency in my family. Just haven't been on the computer.

If I am reading this correctly, you have bilateral knee replacements?

Has any thought been given to the possibilty of a rejection? Could you have a rejection to those implants, causing bone all over to be attacked? I know it would be odd, but, it is possible.

Also, if fractures are continuing, perhaps the testing is worth it, as perhaps, Forteo is doing no good, not addressing the problem? It seems to me to be a bone metabolism issue, or GI issue of not absorbing the nutrients you need. It sounds as if your bone is deteriorating due to SOME unknown factor and the usual treatments such as Forteo, are not stopping it, and that identifying the cause of the degredation is of utmost importance.

I don't know if my opinion helps, but, from my perspective, this is what I see.

I am so sorry you have to go thru all this, and have such a perplexing condition.

One is the way that 'specialist' treated you [NOT] and the other is whether YOU can find any relief anywhere and anyhow? Am I correct here?
"What a fine mess you seem to be in!" It is definitely not fun, neverending and seemingly untreatable.
IF it were me? I'd seek and find out my state medical board and report that doc. Simultaneously I'd contact the hospital's PR dept and DEMAND an accounting of such sloppy behaviour and a pro-bono re-examination from other professionals at another facility at the cost of this hosital to avoid potentail lawsuit? Give them "X" days to respond making it clear that you are inclined to go to the press about such 'shabby & negligent' treatment - It IS the equivalent of amputation of the wrong leg in many ways.
IF I had to set foot in that facility again? I do think I would carry a 'walking stick' akin to the one Mrs D uses [BIGG STICK!] and make it clear that you could use it to 'propel' your self down halls and such...so you COULD use it in such inappropriate situations as you have encountered. Sometimes such things add stature?
YOU did not ask for all this, nor did you anticipate that the therapies that were given you to HELP you would leave you in such a state. At times the docs who were trying to help you did not know all of the consequences. Who all is to blame? Everyone and no one, unfortunately. I truly wish I could offer some solutions? They always seem to be far too obscure and out of reach to be of use.
My heart and soft hugs go to you now, I simply wish I could do more to ease your pain and help you become more whole. 's - j

I'm sorry didn't get you all answered last night. I did post a long message but it was lost.

I saw the ortho who is a PA but was my Mom's PA and she dealt with lots of geriatric patients in a nursing home. I respect her highly. She tells it like it is and isn't afraid to consult with other doctors.

She read the CT report and says that the misaligned bone is doing some healing but will heal misaligned. There is nothing surgically that can be done. But she told me that she had never seen pelvic bones spontaneously fracture without a trauma of some kind. So she has ordered a neuclear bone scan which was done today, ..to rule out bone cancer. My Grandmother died from bone cancer. Multiple myeloma. When my anemia got so bad, I saw an onocologist while I was in the hospital and he recommended a bone biopsy which I refused. But the ortho told me that depending on what they find with the bone scan, I may have to revisit that decision.

The ortho confered with a pain doc in the same office and he said he could do blocks, but that means steriods and I'm not going there. I don't have enough bone.

Yorkiemom...it's not your fault this happened, it's sloppy bookwork which fortunately did not kill me. Texas medicine is still in the dark ages unless you get a doctor who was educated elsewhere. I won't be returning any time soon.

I thank you all for your time and effort spent on me. I'll be posting when I get an update on the report. I expect to get it Tuesday. I have an appt. with the ortho PA and the doctor she works for on Friday to discuss this but I'll have my husband pick up a copy for me on Tues.

Billye

I had no idea about the bone cancer and myeloma in your family. You must be feeling pretty scared, in addition to exhausted.

Dahlek--your suggestions are great! but they are the type that need to be followed by an advocate. It's near impossible for any of us, when exhausted and scared and in pain to do that level of advocacy. Someone else has to fill that role for us, and lucky are those who have such a person in their life.

and wise advocate in your corner! That is one more than you had before, and I suspect the toll in finding that one...well has been greater than most of us can know or appreciate. I hope that this is a person who can get things done....sounds like it.

Liza Jane the advocate concept is great as a concept....but those of us with heavy pain issues simply have to 'work' the constructive complaint and personal advocacy in-between dealing with meeting the bills and wrestling with insurance coverages [making sure the 'i's' are dotted and 't's' are crossed]. It takes me an average of 8-10 man hours to FIND a cogent warm body who can de-bug the intrastate foibles of coordinated medical coverages for tests! Fortunately I became an old pro at it decades before I came down with the immune PN issues. It's a matter of getting and keeping copies of all test orders and EOBS. Then it's a bit of luck in finding a 'plan benefits rep' who isn't brain dead and being passed around until the paperwork gets plugged in all correctly. It is simply far, far harder when one hurts. The option for most on Medicare/Medicaid is that they've probably been near or are bankrupted by their illnesses and qualified 'advocates' are few and far between AND usually for a fee. There is no 'equivalant' for Legal Aid in the medical world YET. I suspect there will be in the next decade and it will be drowning in cases tho.

As for ME? I am doing as much as I can WHILE I can! As I find cogent resources I will definitely try to post them. IN and of themselves, PN issues tho, usually fall far down on the priority totem pole tho, compared to deadly tumors and other dramatic issues one sees on the news... These folks all re quire time and attention. Doesn't mean we don't hurt tho, does it? Hugs to all - j 's

Dahlek--I agree, I agree. I, too, must be my own advocate. But there are days when one is just too tired.

Billye, so sorry that you are going thru all of this, seems like it never ends and you are continually fighting these challenges - maybe it would be wise to have the biopsy just to put your mind at ease.... (I've heard they are painful - but somehow doesnt seem worse then you are continually dealing with every day now?)

As for advocates - if anyone does know how to find one for free - please share! I have spent years trying to find one - talked to hospital social workers, adult protective services , searched the net, etc, none of whom were any help.... what it boils down to if you dont have the resources to buy one - or family to stand in with you - they dont exist.... and we just spend what little energy we do have making call after call and days of paperwork just to keep insurance insurances under control, paperwork done, copies of tests sent to docs, etc....

Hopefully at least the knowledge we gleam from each other helps us when we do see our doctors....

Billye, will be waiting to hear what your doc has to say next week - take care.....