@crikeee, @colleenyoung, @johnbishop, and all...Well, hello everyone. I've been absent from this wonderful collection of Connect Friends for several months due to my own health issues and my son's problems. We're in a fairly calm state presently....the normal roller-coaster of this life, so I'm checking in for a new illness and finding you here.

I was diagnosed with Paget's Disease of the skull last week. Goody. This came at me out of the blue and isn't a fun thought. A month or so prior to seeing my PCP for a follow-up after bloodwork and an abdominal CT, I noticed a ridge in my skull from my forehead to the top of my head. It causes my skull to ache, not a headache, a skull ache. It's new and has gotten deeper, and more pronounced, and now another one developed about an inch to the left.

He took one look and sent me for X-rays and more bloodwork. We haven't discussed this to date, but I'll chat with him soon for direction as to how to move ahead. It's obviously worsening pretty quickly and I noticed the cheekbones on both sides of my face are flattened, probably from the nightly bi-pap headgear I wear. I ordered new headgear to wear the hose in front of my face, using the same nasal pillow, rather than on top as now. It won't put as much pressure on my head or face, so hopefully will stop the facial structural changes. It's become uncomfortable the last few months, I suppose from the Paget's intrusion.

The headgear isn't causing the skull ridges, so I'm praying there's some medication I can tolerate to slow the skull changes. It's very uncomfortable, and painful at times. I take new pain relief, CBD/ CBG with multiple herbs to relieve pain. I just found this company and product, thankfully, that works for me.

From the little research I've done, the little information available...so what's new???... I see there are a few possible treatments for active Paget's Disease. I don't know if it's contributing to the increased pelvic/hip pain I'm experiencing, but suppose we'll know that soon.

Colleen, I'm going now to link the information you listed above. I want more information. Knowledge is key to dealing with these weird illnesses that keep coming my way, but I am getting older, 76 now, and have far less energy due to the iron/ferritin deficiency that drains me of oxygen and energy. Can't keep that stupid ferritin level up to 70 for more than a couple of months, immediately following IV iron infusions. Currently, my saturation level is low, and TIBC, UIBC, and Transferritin levels are very high. So, here we go again.

With all this and everything else in my life, I'm doing fairly well. My attitude is pretty good, possibly helped by the MM I take at night for sleep and anxiety relief and the new pain relief supplement I take. Surely, they do help, but I've worked hard to improve my mental state. I'm working through the causes of PTSD and other emotional issues and have less depression and anxiety. My son and I are striving to make some happy memories now that he's finally getting help from the University of Florida Movement Disorder Clinic in Gainesville. He's having some better moments as he works through his health journey. So, we decided to work hard to make good memories before we can't before one of us moves on from this earth. To peace...

Well, my friends, that's what's new and I'm off now to learn more about Paget's Disease. I thank you again and again for your precious support over the last few years and urge everyone on this site to share with Connect folks to learn and move forward in your health journey. The friends you make here are unlike any I've ever enjoyed. It's a remarkable place to receive information, share with others who understand, to give and receive support.

Blessings all...Elizabeth