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Mom started having side effects only a week or two after being put on it by her primary doctor(diarrhea and restlessness) I called the doctor and we're stopping it.
But what's alarming is the primary doctor was operating outside his lane. She sees a neurologist. Furthermore according to what I'm reading its controversial for advanced cases and most neurologists stop using it in the later stages of the disease. My mom is now later stage. When I asked why she was put on it and what benefit they expected to see they didn't have good answers.
Anyone else have what appears to be a rogue primary doctor?

Medicine involving the brain especially is a "try it and see" type of thing. My own oncologist told me he was "stabbing in the dark" when it came to my central nervous system condition brought on by immunotherapy. If a med disagrees with mom, dx it immediately. My mother was the queen of side effects to all new meds, so I had them discontinued as soon as there was a problem.
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Reply to lealonnie1
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Your Mom sees her doctors unaccompanied? If not, who went to her appointments with her and/or who is her MPoA? Or her Medical Representative (from the HIPAA consent form)? Who makes her appointments for her?

The question is not about a "rogue primary doctor" but rather who is actually driving the bus when it comes to your Mom's medical care? Your Mom by herself? Or someone else who is not managing it well? It appears to need better management and follow-up.
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Reply to Geaton777
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firsttimer1 Mar 31, 2026
my brother who trusts doctors too much. Still he relied on the doctor's professional judgment. Thanks for your insight, have a nice day.
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Our PCP defers to Neurology on these meds.
Neurology here never explains the whys or whynots on these meds. They expect you to just nod your head and go along with whatever they say.
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Reply to jwellsy
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