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it was extremely odd and knocked me so low. i had done months of procedures and testing, while being literally malnourished and underweight, despite eating high fat with protein and vegetables. doc and i had been discussing Evenity as the plan, so i was blindsided by this mention of lymphoma. (“i don’t think you have it, but… Evenity would be a bad choice if you do/did develop it”). my weight loss is unexplained, started in March, during a severe migraine storm. it is possible the extreme pain and fear/terror (4 severe migraines in 26 hours, with 2 visits to the ER in that time) caused my weight loss. but it continues, as do the daily and nightly migraines, which are severe overnight. meds for this are problematic for me, including OTC pain meds. so i live with daily pain at high levels. so, i am weak and underweight and having blood test results that seem to be affecting this Evenity/Reclast decision. i am baffled, more anxious, and trying to get some dr to own this lymphoma citation, and test me.

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Replies to "it was extremely odd and knocked me so low. i had done months of procedures and..."

Hi, @kittiecat
You mention being in the Boston area. Are the doctors you are seeing in Boston? I guess I would be considered to be in the Boston area, I'm an hour north of it, but the quality of care cannot compare to what I have gotten at Mass General. My endocrinologist is Dr. Elaine Yu who is the Director of the MGH Bone Density Center. She has a lot of research to her credit:

"Dr. Yu leads active clinical and clinical research programs in the fields of osteoporosis and obesity/metabolic diseases. She is Director of the MGH Bone Density Center and is actively involved with the American Society for Bone and Mineral Research and the Endocrine Society. Dr. Yu is currently the Principal Investigator of multiple studies investigating the pathophysiology and treatment of skeletal fragility due to bariatric surgery and diabetes."

She is very nice to work with, very approachable, and easy to talk to. Appointments with her almost seem like like visits with a friend.

Another doctor at MGH who I have heard great things about is Dr. Wein. Here is a presentation he gave at an OsteoBoston group that I am part of. I have not actually watched this presentation myself and I unfortunately missed the zoom meeting that night.

I hope you can find a resolution to your problems. That might well require a change in doctors. As I said, I have found the difference between doctors outside of Boston and those at the major medical centers in Boston to be very significant. I go to Boston now for pretty much everything except my PCP.