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After diagnosis, do you continue to see your neurologist?
Neuropathy | Last Active: Aug 24 9:13am | Replies (56)Comment receiving replies
I had a similar experience! Dr W, who ordered the skin biopsies, didn’t talk to me for 2 weeks after someone from the office called to give me the positive results. When he called, he seemed perplexed about my concerns. The next week, I drove to the office and handed the receptionist my list of questions for Dr W. I looked like a crazy person, crying and handing them this piece of paper. A few days later, the OFFICE MANAGER - not a nurse - called me with his answers. 1. There is no cure, but you won’t die from this …etc etc..
I knew this doctor/patient relationship would never work, and I started looking for someone who I felt comfortable with for the long term. I am fortunate to live in a larger city with lots of options. I’m aware not everyone has choices.
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I even had a neurologist tell me years ago, that if I can walk and talk, I’m ok! What a slap in the face
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I have experienced the same type issues. After completing chemo for NHL in 2005, I developed excruciating pain. First diagnosis was fibromyalgia. I was eventually diagnosed with CIPN. I’ve tried many things, but the neurologist doesn’t seem to have any interest in following me or suggesting new treatment options. It’s so frustrating that sometimes, like this morning, I just cry. I would really like to find a neurologist who would look at options and at least act like they care. That sounds harsh, but it doesn’t feel good to get a diagnosis and be dismissed.