Just What I Need-another New Problem, But Can Happen To All Of Us

    • Anonymous
      January 9, 2010 at 3:24 pm

      Hi all,
      Like I need another new problem like I need a hole in my head…yeesh.
      But, I have now come to expect another problem every 4-5months…that seems to be what is happening, as my body deteriorates.

      My Rheumatologist had my Primary Care Physician, order a Bone Density Test on me, because I was on Chemotherapy, (Cytoxan), for so long.
      So he ordered it.
      Bad results–I have what I call, “an old ladies disease”, bad osteoporosis.
      Above -1: Bone Density is normal
      Between -1 and -2.5: A sign of osteopenia, a condition in which bone density
      is below normal, and may lead to osteoporosis.
      Below -2.5: You have osteoporosis.
      My T-Score is -2.68, and my PCP told me I have bad osteoporosis, and put me on Fosamax 70mg 1 tab weekly, and Calcium with Vit.D 750mg twice daily.
      My Spine classification: Abnormal. BMD, (Bone Mineral Density) of 80-110 mg/cc, of which normal is above 140mg/cc.
      He told me my bones a very brittle, and should be extra careful, since I fall once in a while, and can now get a fracture very easily.

      But the interesting thing my PCP is telling me, is that he thinks my chemo only added a little bit to this. He thinks the main reason for getting the osteoporosis, is that I have been with a wheelchair for years now, only able to walk short distances. He said that because I am inactive, and not “using my bones” like I did prior to me getting the CIDP by walking, running, etc., that he feels THAT is what caused the osteoporosis.

      If that is the case, then perhaps many of you on this site should be tested for osteoporosis by also getting the Bone Density Test. It should be brought up to your Primary Care doc.

    • Anonymous
      January 9, 2010 at 5:37 pm

      Hi Ken,

      The results of my last BDT were in the osteopenia stage. That was a few years ago now. The woman who did the test was also concerned about my lack of exercise – as you well know CIDP can make exercising a real challenge.
      Interestingly, the BDT test results I had several years ago (before I came down with CIDP) were better than normal!
      I take calcium/Vit D and also try to do some exercise (mainly in the form of gardening). I thought if I am going to try and do some exercise it may as well be pulling out weeds or trimming the hedges (anything that doesn’t require too much walking – as I can’t do that for very long).


    • Anonymous
      January 9, 2010 at 6:04 pm

      A very close friend of mine (you might say my boyfriend but he says were just friends) broke his back 11 years ago and it’s still not fixed yet.
      A few months back he had the bone density test done and it showed he has 43% bone loss. The DR told him don’t fall you can break something It could be the Osteoporosis that made his back injury worst 11 years ago. They think he probably had Osteoporosis then. He is taking prescription pills for it.


    • Anonymous
      January 10, 2010 at 11:33 am

      This makes me think about the problems of someone needing a wheelchair. I have been dependent on a wheelchair going on ten years now and yes, I have thought about things like osteoporosis. What might help me is that I do very well transferring myself (I need no help). I can stand on my legs and at home I can use a walker and walk room to room, but am not strong enough to depend on just the walker. It is really difficult to exercise properly when you must sit in a wheelchair, but I try to go to a physical therapy clinic once a year.