Who is Paget and what is he doing in my body?

I was officially diagnosed with Paget’s in my right hemi-pelvis shortly after my 40th birthday, September 2012.

I’ve had many x-rays, MRI’s and bone scans over the years. I have also had a long history of “complete blood counts” due to hereditary heart disease in my family. So, back December 2007, when I hurt myself playing golf, a pelvis MRI suggested that I had Paget’s. A subsequent bone scan also said I had Paget’s. However, 2 x-rays of the pelvis and an ALP test, said I had no evidence of bony changes, scelerotic changes, nor was I anywhere near being out of range with the ALP (70 was my number). In retrospect, I believe this was the very beginning.

As a very active person, I have always been involved in running, weight lifting, hockey, soccer, golf and high-impact skiing. Now, let’s fast forward to 11/7/2011. I was playing soccer and I went to try and kick the ball (about as hard as I could to send it way down the field). When I did that, I felt a loud ‘pop’ in my groin / pelvis area. Felt like the muscle snapped onto my pelvis like a rubber band on your skin. I hobbled around for 10 days until my wife forced me to get an x-ray. The attending physician took a few looks at the films and said, “Pelvic avulsion fracture…go see an orthopedic surgeon.” So a few days go by and then I meet the orthopedic. He takes more x-rays of my pelvis, confirms the diagnosis, and tells me to take it easy on crutches for 8-10 weeks and I will heal fine. After 12 weeks, more x-rays to confirm, I did heal fine.

So far, 6 x-rays have been taken since 11/17/2011 to 2/10/2012 -- from the immediate care center to my orthopedic. When I last saw my orthopedic, he put all of these up on the light table and never saw anything (no Paget’s). I asked him to take a good look – but I was just making sure I had a strong pelvis to keep up my activities. One thing I remember him saying to his assistant while looking at the films….”look at this ivory pelvis.”

From March 2012 – July 2012, I was back to being my old self. Playing golf, exercising, running, etc. Then on 7/10/2012 I was jogging and decided to sprint to the finish. A few strides into the sprint, I felt another “light snap” in the same area I fractured. Upon visiting the orthopedic and getting 2 more x-rays (8 totals since 11/2011) he said, “I don’t see anything…maybe it is a labial tear near the joints.” He asked if I wanted an MRI. At the time, I said “Nope…I will take it easy on crutches for a few weeks.

Well, a few weeks went by and I was not getting better. I became “Dr. Internet or Dr. Google” and became a hypochondriac …convincing myself I had a tear in the same area of my healed fracture.

The MRI was completed on 8/2/2012. The results said everything looks great…but possible Paget’s in the right hemi pelvis. I did another Bone Scan, and the results were the same from December 2007… possible Paget’s. In retrospect, I totally forget about the possibility of Paget’s over the last 4.5 years because at every 6 months, my blood draws were never out of range. Then, my blood draw a week after the bone scan was –> ALP 125 (normal range 40 – 115).

I saw an endocrinologist on 9/7/2012 who confirmed the diagnosis. As part of her work-up, another blood draw was done, ALP was now 145 and for the first time out of 9 blood draws over 6 years, a

“bone specific” blood draw showed 45 (normal range 7-20).

On 9/14/2012, I completed a Relcast infusion. 12 hours after, I did develop real nasty flu symptoms. Fever, chills, shakes. A few days later I was real sore (bones, muscles, etc.). Then for about 1 month, I felt excellent. Back to golfing, back to the gym, etc. Then in November 2012, I started to have immense lethargy and slight body pain…but I mostly started to develop muscle pain in my right leg. This pain has been coming and going with various intensity and sharpness with tingling and burning. Sometimes I limp a bit, other times I feel good. A subsequent visit to my Paget’s specailst and she was not concerned about anything malignant happening to my pelvis.

1/6/2013. Being a new “hypochondriac”, I went to my local outpatient center and demand an x-ray of my right pelvis. I explained my previous Paget’s diagnosis. Upon getting the films, Dr said everything looks good. Maybe even improved from my 11/7/2011 x-ray. However, he even admitted he as limited knowledge of Paget’s

I visited my old neurosurgeon who had me do a full cervical, thoracic, and lumbar MRI (with and without contrast) The results? Remarkable spine. However, lumbar L3/L4 and L4/L5 are a bit degenerative. L5/S1 is rather bad…herniated, down to 35% of normal height. Is this the cause of my rt. Leg pain? Neurosurgeon is not 100% sure…as most of my symptoms should point to nerve impingement higher up in my lower back.

I have a friend who is a radiologist, another friend who is a neurosurgeon, and neighbor who is a foot surgeon. I have been fortunate to have them re-read all my films and pretty much concur with the initial reads…beginnings of Paget’s to the official diagnosis.

Here’s a snapshot of my blood draws over the years….

Lab ranges ALP (40-115) Bone Specific (7-20)

ALP (9 results over 6 years) from oldest to recent:

80 (8/10/2006)

88, 76, 88, 90. The last 90 was 10/20/2011

4/2/2012 = 125

8/15/2012 = 116

9/5/2012 = 145, with first ever look at ‘bone specific’ of 45.

11/2/2012 = 47, and ‘bone specific’ of 9.8 ? 7 weeks post

3/16/2013 = 31, and ‘bone specific’ of 6.1 ? 6 months post Relcast

Those last numbers should be a strong indication that I will be in remission for a few years. There have been many studies showing that has maintained remission with a single does for 80-90% of patients for close to 6 years. Over that time, most lesions heal and bone scans show less evidence of Paget’s. It is not a ‘cure’ but is a great step in the right direction.

My retrospective thoughts…

I have mixed feelings….How come the Dr. who noted the first small fracture and the orthopedic…not of seen any indication of Paget’s over 8 x-rays from 11/7/2011 to 7/15/2012? My radiologist friend and neurosurgeon friend noted sclerotic changes on my x-rays and MRI’s. However, they both only read my films after my official diagnosis. Which, they feel, that the Paget’s (within specific areas of my right pelvis, has become burnt out at the moment). The area that appears to be most ‘burnt out’ is nearer to my groin area and hip joint. The entire right pelvic areas (other than I just mentioned) don’t appear to have as much changes, activity or thickening. The semi-good news is that both my hip joint look real good. So I suppose time will tell if the Paget’s will cause osteoarthritis in my right hip joint. Perhaps the remission will keep it from happening?

It’s interesting to see how I have been reacting to all of this. In reality, for almost 4.5 years, I totally forgot about the possibility as all my blood labs were normal. In fact, when I read the MRI about Paget’s in August of 2012, I was surprised. Up until that point, I was still the old me…hockey, soccer, golf, running, weight training. Now I am a “deflated.” Can I still do any of these things? Can I ride a horse? What about playing goalie in soccer? What if I fall on my pelvis? Will my pelvis / hip joint get weaker over time? Am I letting my brain dictate what I feel I can do? Will future fractures increase my odds of Paget’s degenerating into worse things? I know the odds are 1%.

I never had any symptoms of Paget’s. Even after reading many other stories. In fact, symptoms only started after my Reclast infusion. One of those symptoms that still persist to this date is muscle and perhaps bone pain. While it comes and goes and is mostly radiating in my right leg (can’t tell if is coming from the right pelvis)…it gets 100% worse when I exert any effort. For example, ask me to run up and down the stairs, swim a few laps, talk the dog for a walk…and within 12-36 hours later, it will feel like I did those activities 100 times.

4 Replies

  • Hi,

    You do know how to tell a story...Everything so precise and detailed...

    Better days are coming...keep active but don't overexert. You are doing the right things.

    All the best,


  • Hi superdog843, its great to finally hear about someone with a similar condition to me. My Paget's is also in my right pelvis, and like you, I experience bone and muscle pain, as well as extreme fatigue. Thank you for assuring me that I am not a hypochondriac!! We just have to be positive and thankful that it is not a life threatening condition. I wish you well for the future!

  • Hi superdog583, I read your story with interest,you seem to know a lot about what is happening to you which can only help. I was diagnosed in 1993 aged 46 .which my g.p .said was young but not unknown,and saw a consultant at Manchester Royal Infirmary who was brilliant in his handling of this disease,his first words to me reassured me that I would die with Pagets not from Pagets,which actually needed a bit of thinking about at first!!! 20 years down the road I am still walking,doing most of normal activities of daily living and I would say don't dispair .fenerbobslob

  • I also have Paget bone disease in left hip. My right leg hurts real bad.