[Joy]

red herring or first indicator of illness?

by Joy on Tue Jun 11, 2013 11:13 am

Hi everyone!
I was diagnosed on May 1st this year and have been following this forum regularly. Thank you everyone for sharing your wealth of knowledge and experiences.
As with everyone, I'd like to know where this came from. I know that we don't know that yet, but a question that has bothered me is this:

Last August out of the blue, I came down with some kind of illness that basically laid me up for about 10 days. I had a fever, headaches, running water sweats, followed by extreme chills within the same hour. I slept for hours a day and could barely navigate my way around the house due to fatigue. After much online research, I found that my symptoms seemed to be a strong indicator for babesia which is an illness that is related for lyme but isn't always easy to detect on lab results. I was tested for that twice and for lyme 4 times I think. Everything came up negative and I recovered. No doctor was ever able to tell me what I had. Previous to this I had been in excellent health.
My first rib pains started in November and I had what my doctor at that time said was borderline anemia. I felt fine until about January when I started to get tired at the end of the day and in February I couldn't shake respiratory infections. By March I had lesions popping up on my head.
Anyway, could this illness in August have been a triggering event for my immune system to stop keeping the myeloma under check? Or could it have been the first indicator that something was wrong? Babesia affects the red blood cells so it seems like there could be some relationship.
I know I'm probably grasping at straws. Every doctor I've mentioned it to is not interested in it. However, if anyone else has had a similar experience, I'd be interested in hearing it.
On a side note, after my flu shot this year in February, I developed a large bump on my arm that took 2 weeks to go away. Looking back, that was probably due to what was happening in my body at the time.
Is there current ongoing research about viruses and how it could trigger or escalate Myeloma? My myeloma seems to be aggressive but I don't yet have the DNA of it since they could not extract enough on the Bone Marrow Biopsy to do so.
Thanks for any input.

[LibbyC]

Re: red herring or first indicator of illness?

by LibbyC on Tue Jun 11, 2013 7:12 pm

Hi Joy,

"Anyway, could this illness in August have been a triggering event for my immune system to stop keeping the myeloma under check? Or could it have been the first indicator that something was wrong?"

I think that your illness was probably an indicator that something was wrong. Your time between sickness and diagnosis is similar to mine. I was diagnosed in April 09 but in Sept/Oct 08 I had a recurrence of hand, foot and mouth disease (this doesn't normally happen). Looking back I think that was an indication that my immune system was not right. At this time I also contracted a nasty cold - I coughed so much that I either broke a rib or tore the intercostal muscles between ribs. At the time a doctor friend said that I wouldn't have broken a rib unless there was something seriously wrong!!! Another friend (a radiographer) told me to go and get a bone density scan done - but I didn't.

"Is there current ongoing research about viruses and how it could trigger or escalate Myeloma?" I don't know if there is any research into this but viruses can be so sneaky (invasive and evasive) and manipulative (DNA meddlers) that I wouldn't put it past them.

All the best,
Libby

[Joy]

Re: red herring or first indicator of illness?

by Joy on Tue Jun 11, 2013 10:50 pm

Thanks for your reply Libby!
I think you're probably right. This is such a strange disease. Our timelines are similar. I also had fractured ribs from coughing. In February when I had the respiratory infections, I could feel them separating in my chest when I coughed but I didn't actually know that was happening. I thought I had costochondritus and the cough was just straining everything. In November, we did hurricane clean-up in our yard and I thought that I had strained myself from that and developed costochondritus that was taking a long time to heal. When I went to the doctor, she wasn't concerned and told me to take Motrin. In her defense, the odds are pretty long for it to have been multiple myeloma.
It was another doctor in April,( a DO, rather than an MD) that pulled all the strange symptoms together and told me that I needed to see a specialist and that it was probable that I had multiple myeloma. I am grateful to him for being thorough and diligent and kind enough to call me personally on the phone several times through that process.