On 5/15/2008
Nanette7 wrote:
Not sure I'm signing in the right place -- maybe someone can redirect me if possible.
I was diagnosed in 2000 with MGUS. I see other people have lengthy additions to that, i. e., IGA with something or to something or whatever, so I probably have not asked enough information to be clear where I stand.
Long story short. I see a hematologist/oncologist every six months and have bloodwork and a full skeletal survey (X-ray) done. Up until 6 months ago my protein count stayed at 1.2 (whatever), then it went to 1.3 and today I am at 1.6. My doctor says not to be concerned until it gets to 2.0. It was mentioned today that my SED was up as well. Naturally what alarms me is that it stayed the same for 7 and 1/2 years and in six months its gone up a total of .4 bringing me closer to that 2. My fear, of course, is what if it continues at this renewed rate?
I was alarmed when I was first diagnosed, but eventually after there was no significant increase I became less concerned (except at the 6 mos. check-ups). I was getting real comfortable that I just might escape this MGUS developing into anything serious before I turn 100 or expire from any number of unexpected sources.
After 18 years of being a single mom (no financial or emotional assist from my ex) I had finally seen my children through college and married, and then had the unbelieveable good fortune to meet and marry my husband (worth the wait!!) and in the past 5 years welcomed three beautiful grandchildren, now this!
Anyway, I'm going to try and not get over-exercised about it; I too was told early on not to worry that it may be a long time before the MGUS developed into anything truly negative -- if ever. However, since the count has moved substantially in the past six months I am a little shaky again. Can anyone out there explain in laymans terms what is going on and what to ask about? I don't mind going about with the MGUS diagnosis as long as that's what it stays. . . .
Dear Nanette7:
There is nothing worse than the waiting. But you are doing the right thing to keep ahead of anything that might be more serious. If necessary, get to one of the recognized insitutions near you, MD Anderson, Houston.Sloan Kettering,NY, Mayo Clinic, Rochester,MN,Jacksonville,Fl,Phoenix AR. We were on the worry list for about 2 years, but my husband is 77 years old and we have had a good life, but with the continued check ups, we are treating and he is doing quite well. Staying ahead is the best you can do and please get a second opinion from a large insitution, it is worth it in the long run. Good luck, remember you are still young and there is a lot of time left for you.
Ozy31