I have seen 40+ physicians after my reaction to flouroquinolones 11 years ago. They denied it was possible for the medication to cause issues. Even Mayo fucking clinic. I kept hearing the med is out of my system.
In the mean time the label received a new warning because of people like myself reporting neurological symptoms to the FDA.
Still, my EMG was normal so several neurologist told me I’m fine.
Then, I diagnosed myself with small fiber neuropathy with mild autonomic involvement, this is after years of research and learning about any possible causes of neuropathy and symptoms.
Requested nerve punch biopsy from a new neurologist at a top medical institution. Came back normal, so he said „no small fiber neuropathy”.
Well that’s incorrect. Skin punch biopsy has about 60-70% accuracy. He doesn’t offer any more help and says he can’t help me.
I find a new physician at another top medical hospital. They know how to perform the tests I want, which was some autonomic tests and QSART, which is a sweat test.
The autonomic test was normal. QSART revealed small fiber neuropathy.
I’m sorry but it is absolutely fucking unacceptable. I did most of the research and had to gently steer physicians myself. I would never get a proper diagnosis. 11 years! I kept hearing its anxiety. It’s in my head. This is all while seeing top docs, and even professors. The medical community is not doing their job.
There needs to a system in place that looks at results. If a patient gives up and goes to another doctor that actually finds something then there is clearly an issue.
I do have an idea for a business that would help physicians. Basically a central intake form that is constantly being updated with new research, it would provide physicians with some key areas to investigate and possible tests/treatments. Also inform the patient why such and such tests are being done and why the symptom is difficult to diagnose.