Rib Cage Pain and What's Being Done

[aaa]

Another FYI post in case anyone else ever suffers from something like this:

In June 2017, I began to have hysterical pain in my ribcage. Front, back, everywhere. It was excruciating. Thankfully, it settled into dull pain but it never went away. I was hospitalized and had tons of tests. Saw tons of doctors and was diagnosed with costochondritis. Somehow, I knew it wasn't (even though I don't immediately think whatever is wrong with me is due to the DS; I just knew this was). It was just going on too long and was too spread out over the top half of my body to fit the normal diagnosis of costochondritis.

I also felt it was DS related bc of the issues I'd had with my ribs before. In 2014, I spontaneously broke 6 ribs. No trauma, nothing. Just pain that began from nowhere. I've had 4-5 Reclast infusions which have helped keep that at bay (except in March 2018 when I leaned over in my car and felt a break bc I hadn't had a Reclast infusion that year). I now pretty much have to get them every year.

In July 2018, I was about to give up and just live with the dull pain but I then read an article in the New York Times. It was one of those about a medical problem and how it was solved. It had to do with a bone issue. It was nothing like mine, but did mention that the Metabolic Bone Clinic at Yale had solved the issue. I figured, why not? I self-referred and was accepted (after they saw all the tests and reports). The director was semi-retired so he decided on which colleague should see me. I had to wait 3 months for an appt. Tests and discussions followed. The doctor had meetings with her colleagues. They felt it was similar to what happens when one has rickets and since I'm close to 15 years postop it had been going on for a very long time. The solution was upping the calcium even more (I'm at about 5800 mg./day) and adding Rocaltrol (0.25 mcg./every other day; which I'll be on for the rest of my life).

I'd say the condition is about 80% cured. I'm told it will probably take years to totally fix (as it took years for it to show itself). Pretty spooky stuff. But I want to give some hope to anyone who might be suffering.

This is the first time in about 2.5 years I've felt well enough to come back to the boards. It's been rough and I'm glad to be back.

 

[hilary1617]

Glad you found the root cause and have seen improvement. Were you below normal range for calcium and vit D (and above range for PTH) lab results prior to the June 2017 onset and throughout or was this not detectable in standard lab work relative to norms? What were your trends?

 

[Susan in Tennessee]

Yes, I’m wondering same thing. Thank you so much for sharing your experiences and solution.

 

[DianaCox]

Is this regimen improving your bone density as measured in hip, femur and wrist?

 

[aaa]

Actually, my Vitamin D was very good and my calcium was just at normal. The PTH was a bit off but nothing that shouted Problem! Had been for years as I never miss my supplements.

At Yale the 24 hour urine test became a constant. At one point I was doing it every month (and I really dislike it). That was the first clue as to what was wrong. I was about 40 points lower than baseline. So that was the first sign there was a big problem there. And you're right, Hilary, the routine bloods didn't pick up an issue. Yale did a lot more/different ones; focusing on the bones. Nowadays, Yale does them all every 6 months to ensure I'm still trending in the right direction. Just wish I could do it at the same time as my 6 month DS bloods, but they're done by different labs.

Interesting question, Diana. This regimen hasn't done much for the osteoperosis. That seems to be helped the most by the Reclast infusion.

Just always found it odd that it's all been my ribs. No issue with hips, legs, arms, etc. Just the ribcage. I guess we all have our weak spots and that sure is mine.

 

[Munchkin]

Thank you for sharing this! You certainly went to the right doctors!!!

 

[hilary1617]

Actually, my Vitamin D was very good and my calcium was just at normal. The PTH was a bit off but nothing that shouted Problem! Had been for years as I never miss my supplements.

At Yale the 24 hour urine test became a constant. At one point I was doing it every month (and I really dislike it). That was the first clue as to what was wrong. I was about 40 points lower than baseline. So that was the first sign there was a big problem there. And you're right, Hilary, the routine bloods didn't pick up an issue. Yale did a lot more/different ones; focusing on the bones. Nowadays, Yale does them all every 6 months to ensure I'm still trending in the right direction. Just wish I could do it at the same time as my 6 month DS bloods, but they're done by different labs.

Interesting question, Diana. This regimen hasn't done much for the osteoperosis. That seems to be helped the most by the Reclast infusion.

Just always found it odd that it's all been my ribs. No issue with hips, legs, arms, etc. Just the ribcage. I guess we all have our weak spots and that sure is mine.

Interesting.

I'm going to ask my specialist if I should add a urine test to my testing regimen. That said, I know what a pain-in-the-neck the 24 hour urine samples are, as my 16 year old son has Cushing's Disease and has to have them too frequently. Tied to the house. Ugh!

Glad you're in good hands!

 

[Spiky Bugger]

Interesting.

I'm going to ask my specialist if I should add a urine test to my testing regimen. That said, I know what a pain-in-the-neck the 24 hour urine samples are, as my 16 year old son has Cushing's Disease and has to have them too frequently. Tied to the house. Ugh!

Glad you're in good hands!

But! Remember! My last 24-hour urine test did NOT require that...what did you call it?...the bright orange pitcher of doom or something similar!! So there’s that.

 

[Spiky Bugger]

Another FYI post in case anyone else ever suffers from something like this:

In June 2017, I began to have hysterical pain in my ribcage. Front, back, everywhere. It was excruciating. Thankfully, it settled into dull pain but it never went away. I was hospitalized and had tons of tests. Saw tons of doctors and was diagnosed with costochondritis. Somehow, I knew it wasn't (even though I don't immediately think whatever is wrong with me is due to the DS; I just knew this was). It was just going on too long and was too spread out over the top half of my body to fit the normal diagnosis of costochondritis.

I also felt it was DS related bc of the issues I'd had with my ribs before. In 2014, I spontaneously broke 6 ribs. No trauma, nothing. Just pain that began from nowhere. I've had 4-5 Reclast infusions which have helped keep that at bay (except in March 2018 when I leaned over in my car and felt a break bc I hadn't had a Reclast infusion that year). I now pretty much have to get them every year.

In July 2018, I was about to give up and just live with the dull pain but I then read an article in the New York Times. It was one of those about a medical problem and how it was solved. It had to do with a bone issue. It was nothing like mine, but did mention that the Metabolic Bone Clinic at Yale had solved the issue. I figured, why not? I self-referred and was accepted (after they saw all the tests and reports). The director was semi-retired so he decided on which colleague should see me. I had to wait 3 months for an appt. Tests and discussions followed. The doctor had meetings with her colleagues. They felt it was similar to what happens when one has rickets and since I'm close to 15 years postop it had been going on for a very long time. The solution was upping the calcium even more (I'm at about 5800 mg./day) and adding Rocaltrol (0.25 mcg./every other day; which I'll be on for the rest of my life).

I'd say the condition is about 80% cured. I'm told it will probably take years to totally fix (as it took years for it to show itself). Pretty spooky stuff. But I want to give some hope to anyone who might be suffering

Thank you for letting us know.

 

[aaa]

Interesting.

I'm going to ask my specialist if I should add a urine test to my testing regimen. That said, I know what a pain-in-the-neck the 24 hour urine samples are, as my 16 year old son has Cushing's Disease and has to have them too frequently. Tied to the house. Ugh!

Glad you're in good hands!

That poor kid. It's not just being tied to the house for me it's...how do I say this delicately...I sometimes have to begin again bc I get a bit of what shouldn't be in there in there.