Confused re diagnosis

Posted by beccac @beccac, 4 days ago

OK, deep breath and starting over. After receiving a diagnosis of severe osteoporosis after a dexa and being told that I'd need to start on meds immediately I immediately focused on researching (a LOT) on drugs and various exercise/diet changes. I had a visit early on with the ortho PA who focused on an old spine fracture and spine vulnerability and said that I certainly had spinal osteo.. I didn't go double check the numbers then but remembered after the visit that the hip was the worst. Mostly just wanting to understand the medications (I pretty much do now, pros and cons). This morning, a little bit more familiar with the whole terrain, I went back to clarify the dexa results. They indicate that the osteoporsis is just in my left thigh and femur. It seems from reading more that they infer osteoporosis if there's a fracture. That fracture, I believe, came from a really really hard tumble, slipped on some water and fell backwards, landed hard on ceramic tile just above my coccyx. (Excruciating, ambulance, 8 hr wait on a gurney at Hopkins, diagnosed sprain. But those fractures on't show up on CATS I think.) So maybe not from bone fragility at all. I have multiple other spine issues, previously diagnosed - mild scoliosis, 'bone degeneration', arthritis etc., fairly typical old age problems. Sometimes painful but workable. So the real issue is the hip and femur, which is awfully vulnerable. How might that shift in attention change the way I've been thinking about meds, exercise, movement? I'm inclined to only take meds despite the risk if they'll start me on an anabolic. And the exercises I see seem mostly concerned about spine rather than hip safety. Really exhausted and working hard to manage anxiety trying to systematically wade through all of the stuff. It'd help if I trusted docs more but having worked hospice and heard so many tales involving regret at having chosen to wade through series of debilitating txs it's an issue.Sorry if this is vague and rambling. I'm 74, have always been healthy but never particularly active or athletic, no other major health issues (back pain has been around for decades, and here are the stats: AP Spine(L1, L3, L4) 0.856 -1.8 0.6 Osteopenia
Femoral Neck (Left) 0.337 -4.6 -2.5 Osteoporosis
Total Hip (Left) 0.469 -3.9 -2.1 Osteoporosis

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

I only see values for your left side. Did they scan your right side? It’s common to only scan one side then extrapolate those values to the right side. I’m curious as to why you think you only have osteoporosis on your left side and not the right.

REPLY

Because I somehow didn't notice that there wasn't another panel for a right side, doh. I'm sure they extrapolated and thank you for that clarifying info, makes more sense.! No appt. with ortho until February so I'm wading through all this with studies and GPT. And now this forum.

REPLY
Profile picture for beccac @beccac

Because I somehow didn't notice that there wasn't another panel for a right side, doh. I'm sure they extrapolated and thank you for that clarifying info, makes more sense.! No appt. with ortho until February so I'm wading through all this with studies and GPT. And now this forum.

Jump to this post

@beccac Glad you are here to learn more. I was clueless when I started treatment and took Fosamax (alendronate) for over five years without doing any research. I ended up fracturing even on a medication that was supposed to prevent fractures. I learned so much from many of the people here and from reading studies about the various types of medications and physical exercise. You are in the right place!

REPLY

I'm really appreciating it. What a frustrating and disappointing experience you had, ugh, so sorry! Between this vast, searchable forum and careful GPT it starts to come clear so much more quickly. The options may suck but at least you know what ground you're tripping around on. And just feeling the presence of others who get it.

REPLY

There seems to be no clear path towards treatment. Med pros all have different opinions on how to treat, if to treat, exercise, pt or not, supplements or not bone marker tests or not and on and on it goes. It is exhausting to try to do research on your own; I thought I could converse with the doc and get concrete answers as to what to do...nope! Never told that "sometimes" the meds don't do a thing. If after Reclast in July (no side effects immediately but have various bouts of bone pain in various parts of body) I have little improvement it's going to be a hard sell to convince me to take meds (that don't work? huh?). I will need an awful lot of information regarding how the treatment is better than the disease...and yet a lot of people do great on the meds; bone density improves dramatically. We shall see and thank heaven for sites like this!

REPLY
Please sign in or register to post a reply.