SL,

Let us know what the gynecologist says. That's actually where my saga began. During PT for the lumbar the PT had me to stop immediately it hurt so bad. She told me to get to my ob/gyn asap. And that I did...that's when the female issues were discovered. She, then, referred me to an expert...a great Urogyn that really knows his stuff! HOWEVER, I still had the lumbar/sacral issues to deal with. The Urogyn was the one that said BESIDES the female problems, I had nerve damage and to try to get that calmed down first BEFORE doing anything else. So, I had an RF of the L4/L5/S1, sacroilliac injection, coccyx injection and this was all over the space of a year! When that all FINALLY calmed down is when I went into pelvic floor PT...this past summer. Anyway, I know I may be mixing apples and oranges here as your situation is different. So, what the Urogyn explained was...in simple terms...the nerves of course innervate the muscles. The muscles were actually pulling apart, not cupped as they should be and all of this, he felt, was from nerve damage in my lumbar/sacral area. I took what he had to say and after extensive testing (reports) to my spinal PM. He was in definite agreement and told me to proceed with PT. It DID help with the incontinence bit. I noticed after a few visits that I was not having that problem much anymore plus I was not urinating as frequently...normal...but not as frequent as I had been. I need to go back though as I was supposed to have two months of this. It is just that my Urogyn wants a follow up appt and that is next month or in January. Anyway, there was a whole lot more involved as well since I also had sciatic type of pain. But, boy, trying to get this ALL figured out took a LOT of time. Hang in there and let us know what you find out.

Sounds like what you are having, gives you no clue that it is coming. Either your nerves don't sense the full bladder, (denervation) or there is some compression of a nerve, or your sphincter is not holding, or the cauda equina isn't a totally out there idea either. I am glad you are seeing the doc.

On my last trip to my rheumie, we told him that I'm now feeling the bones separate when I move a certain way. The bones in the pelvic area. We had new xrays done that day. They show a large break in the bone that you sit on and when I sit on anything hard or even try to move my right leg too much. Like putting my pants on, it's extremely painful. So the rheumie decided that he'd send me to an ortho for a consult. He advised against surgery due to the fragile condition of my bones but felt he needed to refer me and get another opinion. So tomorrow, we start another saga. If they decide against surgery, I'm told by the rheumie that he will probably put me to bed for 6 months.

in 6 months with bedrest, I'll simply be insane. But I do have a very nice laptop that I'm hoping they will let me sit up in bed to use.

I've also seen the podiatrist this last week and one big toenail has come off and the other one is half way grown back. I was told this was from trauma. Not feeling my big toes. And the ankle that was broken is deforming. I have to have an ankle brace that is a hard plastic thing they will heat and then form to my foot to fit in my shoe to brace the ankle. Do you know how much I don't like wearing a closed shoe?! Well I guess it's not something to worry about since I'll be in bed for 6 months.

I so needed to gripe and complain. There's a lot more, but not tonight.
I was just so ready to complain.......I think that in spite of everything, I've been pretty good about not complaining. But there comes a day that every one of us needs to grumble. I'm really tired of doctors, tests, medicines, insurance, etc. etc. etc.

O.K. I'm thru with the rant.
Billye

Billye:

I just wanted to drop in and say that perhaps the Mineral Metabolism doc will be able to help with some of this. I don't know how long you have to wait for an appointment, but hopefully you were able to get in fairly soon.

I think he will be shocked to hear your history with all of these breaks...

I would hate to see you have to stay in bed for 6 months... Complain away though, you have earned it...

Cathie

Billye,

Just reading of your travails is painful. I am glad they are looking at why you are getting so many fractures.....you have so many non-traumatic fractures. There has to be a bone metabolism issue.

The real culprit? Perhaps it is the Fosamax?

http://findarticles.com/p/articles/m...0/ai_n15890705
Pretty depressing, IMO.

This is pretty awful too:
http://www.lawyersandsettlements.com...s_growing.html
Jawbone death, I think is a marker for what is happening in other bones.
The jawbone is very thin and fragile. Because of its connection to the teeth, and the need for rapid healing...it is showing up first as a significant issue.

The issues of microcracks...are still being investigated. I found some papers saying they don't occur with bisphosphonates, and others that say they do.

I think we are used to having a higher level of drug safety than we have now. It seems like a lot of drugs are fast tracked. I can see that if they are essential to saving lives and the patient has nothing to lose. (In many of those cases you see the release of the drug delayed.) I do not know what the hurry is on some of these other drugs, such as new SSRIs.

You can see this is all market driven...Quick develop a drug for baby boomers!

I have been lucky I guess, that so many drugs make me sick so fast. I haven't been on much for long. I know I had a horrible time with the 4 months of IV methlypred, bad enough that I do not want to ever be on steroids again. Methypred is one of the safest, least destructive ones. I do wonder if I recovered. Then again, some people have no option but to be on steroids.

I try not to worry about spending the rest of my life in pain with loss of function, but what can you do? I guess we all need to weigh the risk versus benefit, really think about what is best in our situation and realize that often drugs get recalled or at least that many drugs have side effects. Pharmaceutical science is after all about putting a foreign substance into a body. It is a bit like the global climate system. You can irrigate land from a river in one place....but it is draining some other place. There is much we do not know.

Thanks for the article. It was enlightening. I was surprised that walking doesn't help that much. I have cycled over 20,000 miles in my adult life...maybe that will help in the long run. I hope I can get on my bike again! It looks rather bleak right now....but ya never know. Walking has been difficult enough. My plans were to keel over on my mountain bike in my 80s....I am a bit ahead of schedule, LOL, and not on my bike!

The ortho looked at the ct scan and the xray, then turned to us and said "nothing I can do". Then he went on to show us all the places that are broken. A lot of them. He doesn't think going to bed will help them heal any faster. It's just going to take a long time. I hope no more break.

He's sending me to a pain mgt specialist for nerve blocks. He is afraid that if they don't block some of the pain, I'll never get over this pain. It is so intense that it just takes my breath away sometimes.

Mrs. D,
Liza Jane and I have researched Fosamax and the other drugs of it's type extensively. Even hung out in the pharmacutical sales reps chat room and "listened" to what they all say about the Fosamax type drugs. I'm not taking Fosamax now. The rheumie took me off the Actonel while I'm getting the Forteo injections. I remember reading years ago that Fosamax makes denser bones, but the denser comes with a price. The bone cells that Fosamax and the other drugs of the same type make, are dead bone cells. They are much more brittle and easier to fracture. I'm not likely to continue to take Fosamax and it's cousins again. I'm at risk with my jawbones now.

Thank you for the evidence to give my doctors about this drug.
Billye

I read your posts and all I think is *****, over and over. I'm hoping you get the bone metabolism folk sooner rather than later, and that the ortho who works with people with bone disorders can give you some glue injections or something similar for a bit more stability.

More than me, Billye has likely been adversely affected by fosamax. It's not associated with problems in the spine; the spontaneous fractures from it tend to be in the limbs. While it does prevent fractures of the spine, it doesnt' help any that do occur with healing.

And as Billye and I have done our reading on bone issues, we've also discovered that there's a pretty vast literature on how Vit D in substantial doses can prevent the bone loss of steroids, like prednisone. It would have been nice for either of us to have known that.

(I don't want to hijack this, but I'm not feeling a need for a new thread or post on my old one, so I'll just note briefly that I've had another CT scan to follow my spine, and with two months of Forteo behind me (a reasonable minimum for effect), at least two more screws have loosened. Between the pain I know and the pain I don't know---another surgery--I'm still choosing the pain I know.)

My old Rheumy put me on Actonel. I noticed after taking it a while, that my jaws seemed to hurt. His answer was to get off of it for a while, which I did. I don't notice this now, so perhaps it wasn't even related.

However, I mentioned this to my Endocrinologist, who very snottily asked if this happened before or after I found out there were problems being linked to these drugs... I suspect he was implying that I wanted to get in line for a lawsuit and his stock would be affected... Never mind that people are concerned over jaw necrosis...

I wonder how these same physicians react when their own family members are affected in some manner by drugs or medical devices...

Cathie