[Paula Larson]

Re: Is osteoporosis / osteopenia a risk factor in MGUS?

by Paula Larson on Sun Jul 20, 2014 4:32 pm

I was osteopenia many years before MGUS. By bone marrow biopsy, I have smoldering myeloma. But by M-spike I am MGUS at 1.9 g/dL. That is why we all need a bone marrow biopsy. I need to schedule with a multiple myeloma specialist. I am undecided if it will be Dr. Tricot or Dr. Barlogie.

[Toni]

Re: Is osteoporosis / osteopenia a risk factor in MGUS?

by Toni on Sun Jul 20, 2014 5:21 pm

Paula - When were you diagnosed MGUS? And was it the bone marrow biopsy that changed the diagnosis? How long ago did they find the osteopenia? Thank you for sharing.

[Toni]

Re: Is osteoporosis / osteopenia a risk factor in MGUS?

by Toni on Wed Jul 23, 2014 10:22 pm

Well, I'm kind of stymied.

I sought out a myeloma specialist and found one who's been published and does a lot of studies in the field of myeloma. I have an appointment on Friday.

The thing I'm stumped about is that the specialist actually reviewed my labs before they even set up the appointment and he told his coordinator he didn't think I needed a bone marrow biopsy.

Really, I don't WANT a BMB, but you have to get one for proper diagnosis. Is it just every doctor in this state doesn't think so

[Multibilly]

Re: Is osteoporosis / osteopenia a risk factor in MGUS?

by Multibilly on Wed Jul 23, 2014 11:19 pm

Well, in the end, you really need to ask yourself what you want to do Toni. If you feel it is important, you should be assertive and insist on one. You basically need to be your own best advocate with this disease. I would also print out the section on this site where at least one doc on this site encouraged you to get one.

As far as the BMB process itself is concerned, some folks definitely have issues with it. For me, I did it without sedation, and found that it was a walk in the park. I just breezed out of the hospital after a relatively short procedure and drove myself home and then took two ibuprofen in case I might develop some pain later that night (I didn't).

I certainly won't say that everyone has that experience, but I wouldn't let the fear of the procedure itself enter in your decision to ask for one or not.

[Toni]

Re: Is osteoporosis / osteopenia a risk factor in MGUS?

by Toni on Thu Jul 24, 2014 9:22 am

Multibilly - I very much agree. I hope and pray I can be assertive enough tomorrow when I meet with him. I plan on printing out the articles on BMB for proper diagnosis and the article(s) about bisphosphonates for osteopenia. I am no longer afraid of the procedure, but it seems weird to be begging for something most folks run away from.

Thank you for your consistent encouragement. It's very easy to concede to the doctors, but the studies don't lie.