@lightgoddess, you are telling my story right now! Had the same odd lab discrepancies in the same areas you’re describing. from the start of diagnostic testing (nearly 2 years ago), I noticed a huge drop in neutrophils, while my lymphocytes were off the charts in nearly every lab report. Luckily I at least got a diagnosis fairly quickly once my oncologist realized how serious the Vasculitis was, but my rheumatologist literally waves her hand away like she’s so irritated I’m asking questions about my condition. Her mantra seems to be “yeah, I wouldn’t worry about that. The rest of your labs look great, so there’s no need to look into it any further.” OHH, ok cool well I’m so glad that you’re keeping me informed and taking my concerns seriously 🙄(First of all, that’s a lie. My labs are never normal but she assumes I don’t know any better, that her diplomas give her the kind of clout where it’s ok to make patients feel like a persistent housefly, incessantly buzzing about, evading a rolled up clinic magazine from 1986. Not a human being, but a burden. I have nearly constant kidney infections that are resistant to antibiotics, but apparently I need to calm tf down about that too. She waited 6 months to send a prior authorization request to my state Medicaid policy, which turned out to be unnecessary because they don’t require a PA for chemo in combination with infusion therapy. I called to follow up 4 separate times between Jan and may, but they kept giving me the run around while I continued to suffer everyday. I’ve never gotten her to refer me to a nephrologist or other specialist, so my treatment is severely lacking. I’ve been bed ridden from a flare up the last 4 days, so I guess the infusions aren’t helping as much as I’d hoped. My point is this: I know how to advocate for myself bc I worked in healthcare- coding and billing- for over 10 years, but this is starting to feel pretty hopeless. So much of the follow-up falls on patients, who are already suffering from debilitating sickness. It seems like a fruitless endeavor to keep fighting, but I’m collaborating with a group dedicated to removing barriers to access, and addressing medical inequity among all patients. Turning this pain into purpose, focusing on how my own experience might help others reclaim their strength? It’s the only thing that gets me out of bed on my worst days. We all have a unique capacity to change the lives of others who struggle daily, even if it’s just reaching out to check on them. Sorry for the novel, I just really really feel your pain and I’m always around if you need to vent. God bless you, I hope things start to get better soon!
Hi Molly (@chiennoir1981). While you’re waiting for @lightgoddess to reply to your shared diagnosis, I wanted to officially welcome you to Mayo Connect! You’ve certainly had your share of medical drama over the past few years and I’m so sorry to hear that you’re among so many of us who have been treated dismissively by our care providers.
I read your bio to see that you are now working with a group to help address the medical inequity among all patients. Reminds me of our own Mayo physician, Dr Victor Montori, who has started a global initiative with that premise in mind. It’s called The Patient Revolution.
The Patient Revolution by Dr Victor Montori
https://www.patientrevolution.org/
It seems like your oncologist is respective of your health issues but your rheumatologist is not. Do you have an option for changing rheumatology providers?