[kristina]

Greetings!

by kristina on Fri Apr 26, 2013 10:15 pm

Hi, my name is Kristina, I am 38, married and have two boys- 15 yrs and 4 yrs.

I have a complicted medical history, but the short story is I was diagnosed with MGUS yesterday, based off lab work done 12-18 months ago. I am seeing a new hematologist at KU Med Center, but I also have a local hematologist closer to home (I live in a very rural area).

I had lab work done yesterday, a skeletal survery, and a bone marrow biopsy. My prior labs showed elevated Kappa and an elevated K/L Ratio in my urine. A bone marrow biopsy last year showed 7% plasma cells.

I have no CRAB features (skeletal survey was normal). My CBC and Chem panel done yesterday are normal. I do have a history of pulmonary embolism and embolic stroke. I also have some osteonecrosis in my knees, which is what led me to the hemo at KU.

I go back to KU the end of May. The hematologist there said at that time he will go over risk factors for transition for me (if any) based off the lab work and biopsy he did.

I know there is low risk to transition to SM or multiple myeloma, and I know some people never transition. I am focusing on the positive, but due to my health history, I have learned it is important to do my homework and learn all I can in order to make the best decesions possible for my healthcare. I have also learned that other people's experiences are valuable, and the support that can be found with other's going through similar circumstances are an incrediable resource, so those are the reasons I am here.

Pleased to meet all of you, although I wish it was under different circumstance!

[Ricardo]

Re: Greetings!

by Ricardo on Sat Apr 27, 2013 4:08 am

Hi Kristina,

Welcome to the forum. I'm sorry to hear about your MGUS diagnosis, but hopefully you will be one of those MGUS patients who remains in MGUS status forever, with no progression to smoldering myeloma or symptomatic myeloma.

As you've probably already figured out, there is a lot of information here in the forums and the rest of the site about MGUS, so be sure to poke around a lot, post questions, and share your experiences with everyone.

Also, another regular participant here in the forum recently mentioned a National Institute of Health study you may want to look into. It's a study that tracks the health of MGUS and smoldering myeloma patients, and it seems to be a great opportunity to get detailed testing done on a regular basis at little or no cost other than the travel that's required. There's information about the study here:

http://clinicaltrials.gov/show/NCT01109407

There are a lot of people in the group at NIH running the study who are experts in the field.

Thanks for introducing yourself! I look forward to hearing more about your story.

[kristina]

Re: Greetings!

by kristina on Sat Apr 27, 2013 9:19 am

Hi Ricardo, thanks for introducing yourself, and for sharing the information about NIH. I will do some research on the link you posted to see if it's something that could work for me! I have learned a great deal reading the posts here in the last week or so, but I know there is still a lot I still don't know!