You know what grinds my gears?
Incorrect information.
Unnecessary arguments.
Promises of false hope.
My Neurologist's PA had an argument with me about Copaxone. She told me that within three months it would CURE my symptoms. Whaaaat? Yes, she used the word cure. I shook my head and as politely and quietly as possible said a few words. "That's not what the literature says. Where did you get this information?"
She told me that my symptoms would go away completely in three months. She was adamant about this. I told her that I started taking the medication with the understanding that it might help reduce the frequency of relapses, nothing more, nothing less. Shared Solutions had been very clear with me up front that Copaxone was not meant to be used for day-to-day symptom relief. Day-to-day symptom management is a different animal.The PA still insisted that the medication was a cure. Whaaaat?
Ya know, I am not a doctor, my previous medical education and work was purely clinical lab - I was all about mice, petri dishes, viruses, bacteria, DNA - a glorified bottle washer and button sorter in a lab coat!
My mind, which is thankfully still capable of critical thinking, is blown. It's perfectly fine for you and I to informally say, "Hey, I feel better since I've been taking the Copaxone!". That's great. Anecdotally, perhaps some people do feel that they have a complete recovery from existing symptoms after a short period of time. Awesome! We're not doctors. Unfortunately, anecdotes are not science and by stating such as fact you do an incredible disservice to your patients. It is both bad business and bad medicine. written 7 months ago by RQ in her secret diary
My life as an entrepreneur, grandmother, writer, dreamer and doer who lives with multiple sclerosis, epilepsy and depression.
Wednesday, February 24, 2016
Multiple Sclerosis - Drugs Plus Disinformation Equals Disservice
Happy 2016!
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MS aside for a moment. I've spent my life as an entrepreneur, adventurer, pioneer, scientist, nurturer and general mischief maker.
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Somebody asked me quite snarkily over 20 years ago what it was going to be like in 20 years when I'm an old grandma with tattoos and piercings. I have an answer now. It rules.
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I probably spent yesterday laughing with my grandkids.
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I love a diverse range of music and it's always cool to find new sounds or get suggestions. If it reminds you of 70s Brian Eno, it's probably something I would enjoy. Industrial Bollywood hip hop? Likely. Indie rock with lots of strings. Yes.
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I'm always looking for some cool funny sciency philosophical book to read. ---//---
My Dx for MS was May 2015 but I've been having significant neurological issues for years. ----
MS - the Special Sitcom episode:
The last thing the nurse said to me after the lumbar puncture was "I hope you don't have MS". I immediately received a post-puncture Coca Cola with bendy straw AND an official MS diagnosis a few weeks later. Jinx. Pretty sure that nurse owes me another Coke.
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Kinda like my doc telling me my thyroid medication would cure my celiac...
ReplyDeleteWow. Why? It's not just happening to me?
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