I couldn’t sleep last night because I was worrying about my hospital appointment on Feb 28th. I finally went upstairs to bed at 4.30 this morning. I phoned a helpline today and spoke to a specilist Myeloma nurse who was very helpful and she has suggested that I request a second opinion at my next hospital visit to clarify my diagnosis whatever that will be and to generally make sure that the diagnosis is correct and give me some peace within myself and stop me worrying. The nurse I spoke to agreed with me that my numbers/blood levels do not meet the criteria for an MGUS diagnosis, they are too high for that but for whatever reason at present the diagnosis is still MGUS.
MGUS is diagnosed if there is IGg of less than 30 -mine is 44.8
MGUS is diagnosed if the bone marrow contains 5% or less plasma cells – a year ago mine was 13%
MGUS is dx if theres no anaemia – I am not anaemic
MGUS is dx if there are no bone lesions – I have no bone lesions
MGUS is diagnosed if the kidneys are healthy – I have healthy kidneys
A diagnosis of MGUS is usually ruled out with figure like mine especially with the added finding of bence jones protein in my urine and the recurrent infections. Add to that the fatigue and sweats and aches and pains and I think I have something more than MGUS, I really hope I am wrong and that a second opinion confirms that its still MGUS.
I am finding it so tough waiting for these results, every waking moment is filled with fear, fear of hearing those words, Mrs Marley I am afraid you have Multiple Myeloma. To think that this appointment next week could change my life forever and set me up with the fight of my life. I am trying to stay positive and I am certainly not miserable, I am just scared. I hope I am totally wrong and that my gut feeling is totally wrong too. The 28th of February can’t come quick enough for me.