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Paget's disease of the bone and other inflammatory issues

Posted by nottoday @nottoday, May 27, 2022

Anybody with PDB out there? My ALP just jumped from 70 to 110. I am having extreme ankle joint pain and swelling and other joint mild swelling/pain. I also was just told I have mediastinal adenopathy.

For those with pagets did your AP go up with other inflammatory processes?
I dont know if my pagets is coming out of remission or if the lab is triggered by the inflammation elsewhere

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Colleen Young, Connect Director | @colleenyoung | May 3, 2023
In reply to @ess77 "@becsbuddy, @crikee, @colleenyoung, and all...I called this morning to Mayo rheumatology. The staff is setting an..." + (show)
@ess77

@becsbuddy, @crikee, @colleenyoung, and all...I called this morning to Mayo rheumatology. The staff is setting an appointment with my rheumatologist to check on the wonky bloodwork...
iron TIBC, UIBC, saturation %, transferrin, lower ferritin level, and the skull ridges. It seems I have Paget's Disease re the skull ridges, but the doctor didn't go further than no fractures and referred me to Mayo.

So, I'm hopeful this will lead to a good understanding of these crazy results. As I mentioned, if there's nothing to be done, ok. But, I think there are issues to address and I want my iron levels and usage improved.

Thanks, Becky for the encouragement. You are a great Connect friend. I hope some of my issues help others. I'd love to know more about Paget's but haven't found any good recent information. Suggestions? Information?

Blessings, elizabeth

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Any update, Elizabeth?

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1 reply
ess77 - Elizabeth | @ess77 | May 6, 2023
In reply to @colleenyoung "Any update, Elizabeth?" + (show)
@colleenyoung

Any update, Elizabeth?

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@colleenyoung and all...Nope. Haven't heard a word from Mayo and I'm really in a funk about the whole thing. It must not be anything to be concerned about or surely the rheumatologist staff would have contacted me. I refuse to be a bother to anyone and at this point feel like I'm a pest if I reconnect with the dept. My PCP isn't pleased at all and has had no luck to date ever getting a referral for me from him. I emailed him on his portal with info about the rheumatologist and my contact. I connected both health providers' portals so they can see each other's info and tests and my messages, etc. My PCP portal says they have trouble trying to see the Mayo info, etc. So, pooh on everyone!

I still have the ridges in my skull and suppose they'll go nowhere. Yes, they do cause me irritation, not pain per se but dull aches. like the bone is aching. Not the head...

The bloodwork and iron saturation and other iron issues haven't changed, either. No one is following this for me at all. My PCP tried but can't get Mayo docs to follow up. He's concerned about the O2 etc.

I purchased a supplement from Research Verified, the online company from which I get the excellent probiotic referred to me by the Mayo doc to help with constant diarrhea/constipation, IBD. Its Probulin and it works wonders. They also have an anemia supplement, so I bought it and am using it daily. No idea if it's helping, hurting, or doing nothing. I am a bit more energetic, in that I can walk across to visit my son and help him some and not spend the next day in bed. He cooks steaks and asparagus or spinach salad several times weekly which is probably helping a bunch.

No bloodwork in this area is scheduled until go back to PCP in July, I think I need iron infusions regularly, every few months, but I'm only the patient. What do I know? And, I'd really love to know why this continues to happen!

So, guess I'm in the proverbial rabbit hole or merry-go-round.
Thanks, Colleen, for asking and caring. Blessings, Elizabeth

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