Timothy Salz: Turning Diagnosis into Harmony
A Birthday Gift I Didn’t Ask For
My Waldenstrom’s macroglobulinemia (WM) story officially began in January of 2018, two days after my 70th birthday. Happy Birthday, Tim! Unofficially, I believe it began many years, possibly even several decades before that. I first sought medical attention for what I have come to understand as WM-related symptoms about 18 years ago, when the shooting pain in my feet became so bad that it was waking me up at night.
My primary care physician (PCP) at the time was unable to determine a cause for the pain, and a referral to a podiatrist eventually led to a diagnosis of peripheral neuropathy and a prescription for gabapentin. This medication provided me with substantial pain relief, in general, as well as helping me to sleep better and improve my mood.
During the 18 or so years before my official diagnosis with WM, I also experienced additional symptoms that I now understand to be WM-related. At the time, I attributed these symptoms, overall fatigue, occasional night sweats, and severe nocturnal leg cramps, to getting older. When I eventually complained to a new Kaiser PCP that my feet felt like numb stumps at the ends of my legs when I got up in the morning, she said, “I see peripheral neuropathy all over your chart, but it looks like nobody has ever done a work-up on it.” Thus began my Waldenstrom’s journey.
Investigating the IgM Mystery
After asking me an endless list of questions about my medical and personal histories, my PCP posited that the most likely cause of my neuropathy was my alcohol intake, since I had been drinking regularly since my
early 20s. While I didn’t relish the idea of stopping drinking, it did seem like a relatively simple cure, if that was indeed the case. Beyond either stopping or substantially cutting back on my drinking, my PCP recommended an extensive battery of blood tests.
Over the next few days, the blood tests came trickling in, all of which were in the normal range. However, after about a week, I got a call from my PCP telling me that one of my tests was rather high and asking if I could get it redone. I promptly did, and a few days later she called again to tell me that my IgM was well outside of the normal range, and that she was referring me to a hematologist. At the time, I had no idea what a hematologist was, so imagine my shock when I arrived for my appointment and saw that it was at the ONCOLOGY CENTER!
My appointment with the oncologist was uneventful, and after a brief physical exam and another endless barrage of questions, I was referred for a full body scan and bone marrow biopsy (BMB). The results of the body scan quickly came back negative, and I anxiously awaited the results of my BMB. After about two weeks, I got a call from my oncologist who said I had a rare blood disease called Waldenstrom’s macroglobulinemia.
He said that while my IgM was much higher than normal (1,660—almost ten times higher than high-normal), it wasn’t so sufficiently elevated that it was likely the cause of any of my symptoms, including my neuropathy. Therefore, it was his recommendation that we “watch and wait.” While the thought of chemotherapy or other invasive treatment was certainly not appealing, the thought of doing nothing while a cancer infested my blood was terrifying. Feeling less than satisfied, I headed home to begin my own search for more and ideally better information.
The Right Team, The Right Treatment, The Right Results
Many hours of research on the internet led me to two primary sources of information that proved to be lifesavers: the Waldenstrom’s Facebook page (https://www.facebook.com/groups/wmsupportgroup) and the IWMF website (www.iwmf.com). I spent much time reading other WM patients’ accounts of their experiences with their PCPs and oncologists, viewing videos of WM experts speaking at conferences, reading many of the studies that have been conducted on WM, and even attending a WM conference in New York.
With this information in mind, I called my oncologist and questioned him again about my neuropathy, which was getting worse and spreading into my fingers. During this consultation, he shared his general opinion about WM: “The only difference between Waldenstrom’s and other lymphomas is how often you follow it.” I began to seriously question his expertise with respect to WM, and eventually I asked him, “How many Waldenstrom’s patients do you have?” He quickly replied, “Enough.” I again asked, “Really, three or four or more than twenty?” He became angry and shot back, “I’m not going to go through all of my records and find out exactly how many Waldenstrom’s patients I have.” That was the last conversation that I ever had with this oncologist.
If I have one bit of advice for you, it is this: Listen to your body and do your own research!
I went back to my PCP and told her about my experience with the oncologist and my concern about my worsening neuropathy. She referred me to a neurologist, who conducted an electromyography (EMG) and ordered another series of blood tests. The results of her examination provided the answer I was looking for. My IgM was associated with a rare autoimmune variety of IgM known as Anti-MAG (which stands for Anti-Myelin Associated Glycoprotein Peripheral Neuropathy). This meant that while my IgM was not particularly high, it was particularly virulent and was destroying the myelin sheathing around the nerves in my legs. Left untreated, I would be headed for a wheelchair in the not-too-distant future. She referred me to an oncologist in San Francisco with whom she had previously worked on several difficult cases.
My own research had informed me that very few oncologists or hematologists in the community know much about WM. I concluded that if I was going to put my life in someone’s hands, it needed to be an expert. This led me to Dr. Jorge Castillo, a world-renowned expert in WM at the Dana-Farber Cancer Institute in Boston, who would supervise my treatment in cooperation with my local oncologist.
The rest, as they say, is history. My new oncologist was delighted at the prospect of collaborating with an internationally recognized expert, and after flying out to Boston from San Francisco to meet with Dr. Castillo, I immediately began a round of rituximab infusions. While this treatment was helpful and significantly lowered my IgM, Dr. Castillo said he was looking for “a deeper response.” Consequently, that treatment was followed by an additional round of chemotherapy that combined bendamustine with rituximab, which lowered my IgM into the low 300s. Without additional treatment, my IgM has continued to go down and was 248 as of November 2025, only 58 points above high-normal.
A Song for the Journey
So, after all of that, how am I feeling? I feel great! While my neuropathy is still there, it has improved substantially, and I have been able to decrease my gabapentin dose by one third. I haven’t had any night sweats or
leg cramps, and my energy level, though not what it was when I was younger, is greatly improved and probably higher than that of the average 78-year-old. I meditate and do yoga daily, go to the gym twice weekly, and walk my dog, Amara, for two to three miles a day on the mountain where I live. I am semi-retired and spend most of my time working in my wood shop, maintaining my property, hanging out with my wonderful wife, or playing in my music studio.
Speaking of my music studio, after I was diagnosed, I wrote a song about WM. Initially I wrote it as an upbeat way of telling my huge family about my condition at a Thanksgiving family reunion. I then posted the song on the Waldenstrom’s Facebook page as well as on YouTube where it now has over 4,300 views. While I was initially hesitant to post it, concerned that others with WM might feel I was making light of the disease, I was pleased to find that it was greeted with great joy and delight by the WM community. If you would like to see it on YouTube, CLICK HERE.
Thanks so much for getting this far, and best of luck to you in your WM journey.
Tim Salz
Mill Valley, CA
January 2026