My MGUS isn’t stable, I cant do anything to stop my numbers rising so the medical profession tells me. I am not going to pretend that I am not worried because I am and so is my Haematologist which is why she has done more tests, I only wish I could have the results sooner to see if my diagnosis has changed. I have other symptoms too which is why there is concern for me. In my next blog I will explain why there is concern.
After my MGUS diagnosis there was a lot of questions to ask and a lot to learn. The main thing I learned was that I would need to go to the haematology clinic every three months for the rest of my life. I needed monitoring regularly because MGUS was an unusual finding in someone my age, it is usually detected in people around 60 years old and I was only 37 at the time. I discovered that my particular type of MGUS is IGg Kappa.
MGUS is basically a precancerous condition which has a 4 in 10 chance of turning into Multiple Myeloma eventually, and the longer you have the condition the more chance you have of it turning into myeloma. As I was so young at diagnosis, I am at a higher risk because I have more years life expectancy in which to develop the myeloma. Multiple Myeloma is cancer of the plasma cells and therefore the bone marrow, as this is where plasma cells are made within the body.
MGUS is basically a term used to describe the finding of a monoclonal protein (Immunoglobulin) in the blood. A monoclonal protein is an immunoglobulin which keeps replicating itself and producing identical clones of itself. An immunoglobulins normal job in the body is to attack and destroy infections, they fight off the bad germs for us. We have several different types of these good immunoglobulins and they each have a letter for instance IGg, IGa, IGm. In MGUS one of these immunoglobulins goes crazy and starts multiplying clones of itself, leaving less room in the blood for the other immunoglobulins. We all need a good balance of immunoglobulins to maintain an effective immune system, when one immunoglobulin gets out of control and crowds out the others, the balance is severely upset causing the immune system to fail. The overproduced immunoglobulin is useless at fighting infection because of its crazy mutated state.
MGUS can be happily lived with as long as it is monitored and as long as the amount of protein stays stable. If levels of protein keep rising then the MGUS is not stable and it may mean that the condition is progressing towards myeloma, so more testing needs to be carried out.
My IGg in 2002 was 16, My bone marrow contained 4% plasma which is normal and I had no bence jones protein in my urine, no bone lesions on x-ray, no kidney damage and no anaemia.
In 2007 my IGg was 30, my bone marrow was 13% plasma (normal is 3 to 5%) and all was well with my other results.
In November 2007 My IGg was 43.3, and bence jones protein was found in my urine at 0.06, more testing was ordered
In January 2008 My IGg was 44.8, I had a bone marrow test done again and I am waiting for the results, and I have had more blood tests and I am waiting for those results as well.
I have been waiting a whole month for the results, it is a really tense time for me, I get the results on the 28th February 2008.
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In July 2002 at the age of 37 I began having pain in my joints, particularly in my hands and wrist, I visited my doctor and he prescribed me some Ibuprofen and took a blood sample to test for rheumatoid arthritis. A week or so later I recieved a letter through the post from my doctors surgery, this was strange as usually I would have to phone the surgery for my results. The letter said that the blood test had shown an abnormal protein in my blood and that an appointment was being made for me to see a haematologist. I phoned the surgery to try and get more information but I was told that I required more tests and they could only be done by the Haematology clinic at the hospital.
At this stage I was really worried, so I decided to use my medical insurance from work to pay for private tests. At the consultation I saw a lady doctor who explained that the protein which had been found in my blood could mean that I had multiple myeloma, knowing that this was a form of cancer I went into instant panic mode. My bloods were taken and the results came back and I had another appointment to discuss the results, I was told that I would need a skeletal survey (x-rays of all my bones) an MRI scan and a bone marrow aspirate. My health insurance only covered me for £180 and the blood tests and consultations had already cost £595 so I told the doctor that I could no longer afford the private treatment. Luckily the doctor said that she also worked for the NHS so I would still see her even if I wasn’t a private patient. I had the MRI and all was fine, only minor wear and tear showed up. The Skeletal Survey was fine, no bone lesions or damage. The bone marrow aspirate also came back normal. At my follow up appointment I was told to my relief that I did not have Multiple Myeloma but I had a condition called MGUS (Monoclonal Gammopathy of Unknown Significance).
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