Down the Rabbit Hole and Back, Part 1: An Update On My Diagnostic Testing

Since I last wrote, I have had appointments with both the hematologist and the specialist in Anti-MAG peripheral neuropathy and the news so far is good, but the process, as all things with Lupus, continues to frustrate and perplex me.

When I went back to the hematologist, he confirmed that the blood work he ran looked the same--I had a spike of "gamma" proteins in my bone marrow, but it was low and the rest of my blood work looked fine. So at this point, he was fairly certain I had MGUS, or Monoclonal Gammopothy of Undetermined Significance and not something more serious like a cancer of the bone marrow. To give you a short explanation of what MGUS is, it means that one of my plasma cells has started to reproduce itself for some unknown reason, and each of those new cells are doing the same thing.  This in turn creates extra antibodies or proteins (the "gamma" protein specifically).  In cancer, the reproduction of these cells and proteins gets so out of control, they eventually crowd out all the other cells in your bone marrow, leading to damage. In MGUS, the extra cells and proteins aren't really posing a threat yet, but there is a small possibility that they will, so people with MGUS need to have their blood screened regularly (every six months or annually) to make sure the reproduction hasn't increased.  I found a really great video explaining the process; I will link to it at the end of this post.

Getting back to my visit, in order to properly rule out anything more serious we agreed that I should get some x-rays done of my bones to make sure there was no visible damage to them (which would be seen in cancer), and that I should get a bone marrow biopsy, where they have you lie on your side, with your knees all the way up to your chest, and actually stick a big needle into the back of your hip bone and draw a sample of your bone marrow for testing. 

Needless to say, I was really anxious about the biopsy.  I've seen movies and TV.  I've heard that the procedure is really painful. Luckily for me, I live in Los Angeles and really close to Cedars-Sinai, one of the top hospitals/medical centers anywhere. The doctor and nurses who did the biopsy all had the best bedside manner so they made me feel safe. They had the top of the line technology for the procedure and they also had the resources to make me "feel comfortable," which was their constant euphemism for telling me that they were giving me pain killers and knocking me out.

It worked.  I only remember my eyes opening once during the procedure, making eye contact with R.N. and hearing him quietly tell the doctor, "she's awake," and then suddenly drifting off back to sleep.  When I finally came to, they brought my husband in, who was giggling at the look on my face:

When I went back for my results a week later, the MGUS diagnosis was confirmed, which is relatively good news. The likelihood is very small that it will ever develop into something more serious. I have since talked to my rheumatologist about it and she said that MGUS is very common in Lupus patients and that she wasn't too worried about it. As usual with Lupus though, they don't really know why this happens, so that remains a mystery. Anyway, the hematologist and I agreed that he would run blood work every six months and if after a couple of years things still look good, we could cut it down to an annual visit.

As for the neurology visit with the Anti-MAG specialist, I will leave that for my next post because after seeing him, he had me scheduled for an EMG at the end of this month. To give you a bit of a preview, I can tell you that although I have the Anti-MAG antibodies, he doesn't think it's the Anti-MAG causing my hand tremors and leg pain. Just like the MGUS, it's likely to be caused by the illness I'm already diagnosed with--this time being the Fibromyalgia.

So, you can imagine my frustration and confusion. I've been down a rabbit hole of medical procedures, leading to new diagnoses, but all the while it has all come down to the Lupus and Fibro. Basically, my body is wonky and no one really knows why it expresses its wonkiness the way it does. It just does. So, I learn to live with it, to develop patience with it, and honestly, to be curious about it. So, I'll continue to tune into my body and try to decipher its language and if it's helpful in any way, I'll continue to share what I learn with you.  So, I'll update you on the EMG test in my next post.  In the meantime, here is that MGUS video I mentioned.:

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