I was got my diagnosis of MGUS last September after a sinus CAT scan that showed lesions on the skull. I had bone xrays and an MRI of the body and a bone marrow test. As well as a blood work up.
When I returned to see the oncologist, he told me the bone marrow was clear and to watch for hives and itching. The report on my blood work stated MGUS with lytic lesions. So I thought I had MGUS and started researching and found this forum. I also saw my ortho doctor still complaining of pain in my right leg and hip, which had been replaced. He again did an xray and it showed a lesion he had ordered on MRI on several years ago with no concerning results.
After reading the Beacon for several months, I saw an article from the past by Dr. Rajkumar about lesions and decided I would travel from Oklahoma to the Mayo Clinic to see him. I saw him last week and was very suprised to be told that I did not have MGUS but mastocytosis which was in the bone marrow report. I was never told this or offered the report. It is not like me to not question things but since I was told to just come back in a year, I was happy.
This diagnosis it not great, but I think it is somewhat better and explains several things that I have been treated for for several years. I was most pleased with my visit with Dr. Rajkumar and am awaiting his phone call when he returns from the conference. He had conferred with an associate at Mayo about my condition and I plan to return to see the new person.
I will read here from time to time as I have followed many of your journeys and fell like I know you. My advice is do not hesitate, as said many times here, to seek advice from an expert in the field. I am so glad I did and now can start a new journey.
EAJ
|
||
Independent, up-to-date news and information for the multiple myeloma community. |
|
