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Paget's Disease of the Bone
4 Replies
littleloey - March 26

It's me again. I have been tentatively diagnosed with Pagets, It is in my skull and they are doing further testing next week to see what other bones are affected that could be affecting my walking difficulties. Do any of you have Paget's of the bone or know anyone with it? Coupled with FM I am having a pretty hard time right now.

 

January - March 29

Hi little joey - just wondering how you are doing and if you have gotten any further any getting a diagnosis? I was just reading a little about Paget's Disease of the Bone. I guess it can be pretty painful, yes?

I don't know anyone with it - but from what I was reading they say it can be controlled if you catch it early enough. Rheumatologists and endocrinologists usually know about it.

Interesting, I read on Wikipedia that there might be a viral cause, along with a genetic component, and that the bone looks different from normal bone on X-rays.

Good luck with your journey on this. Sorry you are having a rough time right now, I hope you can get some help soon.

 

littleloey - March 30

Hi, January. I am doing about the same. Spent 5 hours at the hospital today having tests. Hope that I will have answers in the next couple of days. The pain is not unbearable but always there, but the line gets blurred between the FM and whatever else is going on with my body. The last couple weeks I feel like my whole body is just one big trigger. No matter where I'm touched, it hurts.
It's hard to explain how I feel. I don't really want a diagnosis of Paget's but I need to have a diagnosis. I need to know what it is and what to do about it and how to plan for my future.
The Paget's is pretty certain in my skull, the question is if it is in other bones that I am having so much trouble walking.
It was so nice to hear from you. I guess there are not many who have heard of Paget's or know anyone who has it. Of course maybe an FM site is not the place to talk about Paget's. LOL
Hope you are doing well and having many more good days than bad.
When I get word I'll post it.

 

littleloey - April 1

I got test results today. The tests did not show up as Paget's. That is good but, it does show bony growths on my head and 3 abnormal bony grows in my cervcal spine at C1, C2, and C3. My family Dr consulted with my ortho specialist and neither one of them has seen this before and do not know what it is. The growths showed in the MRI. If they were bone cancer they should have shown as "hot" spots in the bone scan so the Drs. say there is almost no chance it is cancer. That's good. Because they have grown rapidly they are going to send me to Mayo as soon as they can get me in. Kind of scary but will be better to know. I'll be back when I know more.

 

January - April 1

Well, that's really good news, that you don't have Paget's or cancer!

The 21st century sure seems to be ramping up with the "weird" diseases of all kinds. Or maybe it's that we now have the technology to see inside the body so well. I have no idea what you've got going on. It reminds me of a couple friends who have had bone spurs in various places - and they were easily removed with surgery. Let's hope you have something simple like that.

Meantime, for the sake of your fibro, deep breaths! And try not to stress about it. Wishing you the very best and hope you get a quick and definitive resolution to this. And I hope you're not in pain.

 

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