My Walk
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I originally was originally diagnosed as IgM MGUS. This was originally found because I had elevated liver enzymes and they couldn't find the reason why. After a lot of tests, that was the original diagnosis in 2012.
As the next several years went by, symptoms like soaking night sweats, fatigue, bad neuropathy shocks in the hands and feet, and bad head aches. Over this time my oncologist did several bone marrow biopsies. As time progessed, each showed a little more progression into the bone marrow. As of last October 2016, it had jumped past the 10% range which qualified it to be Waldenstrom's. I would like to add, for the 6 months leading up to the test where I made the jump to WM, I had been taking Turmeric, hoping to lower my numbers and it did the opposite. I would cautionary trying to go homeopathic with this disease. At this time all of the previous symptoms had gotten worse. We tried Lyrica for the PN, but it didn't work. Then we went to Gabapentin and it deadened the shocks, but I could work in the brain fog it produced, so I am back to taking nothing for PN.
In December of 2016, I did 4 weekly rounds of Rituxan, followed by maintenance Rituxan every 8 weeks, the last taken in June of 2018. My Igm numbers remained stable, but never went down. After each Rituxan treatment, 5-6 weeks out, my symptoms all started reappearing again. This time accompanied by what I would call "ice cream" type headaches. They would be instant shooting paint headaches directly behind one of my eyes. These would last 5-15 minutes and leave as quickly as they came on. After discussing this with my oncologist and getting advice from Mayo Clinic, as of September 2018, we are starting a new regiment of Rituxan and Bendamustine for 4, 27 day cycles. The goal is to push the numbers down, so the symptoms will subside for a couple of years.
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