The business idea is a great idea. I just mail my doctor yearly to check if procedures X, Y and Z are done in my country yet and always get a polite nay. But that’s for a situation where the root cause is well understood only the procedure too expensive for our doctors to implement. (With all respect for the failings of US healthcare, the availability of best in class procedures is pretty awesome.)
I have learned that for an EDS patient it takes average of 10 years for a diagnosis. The tests are simple and any physician could do them following simple q&a and straightforward tests. Such a long time before diagnosis results in terrible outcome for the patient. The story of “its in your head” is often repeated here.
It’s not about giving 40 chances. Most doctors refused to listen and have performed tests that were unlikely to yield any results. They disagree with me the patient and if their assumptions were not correct they would often refuse to continue.
We need to centralize the knowledge base. Take what top specialist in their area of expertise know and review what support groups discover to see if we can improve.
For example, in small fiber neuropathy there is a physician Dr. Oaklander, she was so tired of hearing about people not getting the correct treatment she created a list of possible causes and tests.
Not treating autoimmune induced SFN can results in serious complications, while treating it can results in complete remission.
These stories are often repeated among many different communities. These communities found the top specialist in the country and proper tests, but their doctors refuse to work with them.
Medical professionals don't acknowledge PTSD they caused, and it's odd that I have to seek help from the same people who hurt me.
There are a lot of us suffering alone from medical neglect and gaslighting. I wanted you to know that I see you.
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 an absolute pile of trash, and makes me question where we as humans went wrong.