Friday, April 26, 2013

Hospital evacuation, 2 specialists down, and aspirin

So it's been quite the week... in more ways than one. I have seen all of my specialists – rheumatologist, ID specialist, endocrinologist, and Dr. R all within the last week. All my blood tests were pretty much FINE. Of course they were FINE.  I saw an endocrinologist who ruled out all other conditions that could be causing my low bone density in my spine. My T & Z scores of my L-spine are -2.2, classified as osteopenia if I were post menopause, but I’m not. Osteoporosis is classified with scores starting at -2.5.  The endocrinologist does want me to have a bone density scan within the next year and I will see him to review the results. He told me to be careful of falls and “no wrestling”. Heh. I wrote that down so I wouldn’t forget. ;) My ID specialist says all conditions within his specialty have been ruled out including the periodic fever syndrome, but he would “keep me in mind” if he thinks of anything or hears of any studies involving people with chronic fevers. My rheumatologist said as long as my joint pain is gone he can see me in 6 months and then just as needed. Two specialists down! YAY! Another bit of excitement was that there was an evacuation while I was at Brigham and Women's for that appointment. Yikes... false alarm, obviously.

I am still having fevers and all specialists have concurred that they are being caused/triggered by my MGUS/SMM. Also, the low bone density in my spine is due to the MGUS/SMM as well because the most significant loss is in my spine and that tends to be where myeloma presents.  So…that pretty much sucks. But, at least at this time, everything with me is pretty good minus the low bone density and my 10ish% plasma cells. Dr. R said that because of the low bone density in my spine and the fevers, I am definitely more smoldering than MGUS. But, I guess I already knew that. He is going to have a radiologist review/compare my lucent lesion from this February and 2009 to see if there have been any changes within the bone.

Good news for me is that no one wants to treat my low bone density at this time...for a couple of different reasons. I am going to continue vitamin D and calcium supplementation and weight bearing exercise. Dr. R recommended 2-3 aspirin daily to hopefully get the fevers under control (also fights/prevents cancer according to a study he referenced). Within the next year or so I will have a repeat BMB, PET/CT, and bone density.

And the beat goes on... my favorite quote from my appointment with Dr. R was this, "Elizabeth, please don't take this the wrong way. But we as medical professionals find you very, very interesting."

Heh... not sure that's a good thing. :)


  1. Elizabeth,
    Sounds like you are getting really good care. Your scores on low bone density are the MGUS related result. I guess the course on Vit D, Calcium
    etc. is the conservative approach to bone density? My Dr.'s local PCP and "anxiety Physician" are also intrigued by the SM/MGUS particularly when they hear that both my father and brother had Myeloma, along with myself.
    There response is "jeepers." or "Is it genetic."? i tell them no, probably just environmental factors! But who really knows.
    Keep us all posted and we will be pulling for you!
    Take Care,

    1. Hi Keith,

      Thanks for your kind words. Yes, we are definitely going the "conservative route" in terms of treating my low bone density for now. I hope you are doing well!

      Take care,

  2. Its good to get PET and bone scan done, so that you will get a clear picture about everything. And hope for the best. Thanks for sharing information.