Toolkit - becoming an empowered advocate for your own health

Hi Everyone,

I found this link the other day which has a few tips on becoming your own health advocate, particularly for those who are not yet formally diagnosed. Given how the sand sometimes shifts with neurological conditions, I thought it may be useful..

Does you have any tips they'd like to share?

This is very good advice. If you could wind up 7 years prior to a diagnosis, I'd kind of advise the opposite of what many medical professionals have attempted with me: treat the symptoms, prior to diagnosis. I'd go for any medications that have been known to treat the pain.

I went to a pain management clinic, who had me fill out a questionnaire about pain. 98 percent of the questions were about narcotic use, with an accusatory tone (I don't take them, but there is nothing wrong with doing so imo), and 1 percent were about pain. When I got there all of the information most of the information for treating pain was available online anyway (anti convulsants, anti depressants, etc).

Pain is pain, hopefully one day it will be treated as as a disease in itself. As is, pain seems almost more of a symptom that we are social diseases. I'm personally very tired and don't want anymore debt, bills, sometimes outright mocking from medical professionals (particularly ER doctors who laughed, rolled their eyes, made jokes, and so forth, and sent me to the psych ward).

I wish medical science was taught in primary schools. My dream is that one day patients would be primary care doctors. Reading the latest medical studies and choosing the best treatments according to their systems. The psychological damage I've suffered trying to interact with with this system is immense. Just like we had a sexual revolution where parental figures no longer made choices of what was inserted into bodies, I'd like to see a medical revolution, as the status quo seems kind of 1850s.

But in the mean time while trying to get a diagnosis. If the doctors/neurologists around you are more concerned with diagnosing with precision than treating 'symptoms' pain, hit up a psychiatrist and say you're bi polar: Carbamazepine. Depressed: tricyclics and SNRIS. The mind is just a functioning part of the brain: the same medications are use for mind/brain because it's all physical.

The idea that excruciating pain demands a precise diagnosis to be treated is insane. All pain should be treated as real. For people so concerned with diagnosis, the medical community sure does lack objective tests. For all of the people who have treated me like garbage, I honestly like to see these people contract the same conditions and walk a mile in the shoes of people who experience horrific pain. Then try to act all self righteous, all knowing, and so forth. They sure wouldn't be to quick to judge and so slow to treat others pain.

Hi Kuchak, not sure putting yourself up as bi-polar would help much in the longer term. I know when dealing with the medical profession, we're at a disadvantage within the power dynamics, but I've always found most doctors are open minded about diagnosis. I spoke to my neuro the other week and and he summed it in a really kind and gentle way. He said head pain is pain, neuralgia is neuralgia and if its in the eye, the nose, or the back of the head, it usually has the same meds to treat it. If the meds work, the label isn't that important unless you go down the surgical path. Then they need to know which nerves are involved. So some doctors do approach treatment from the pain management perspective. It sounds like you've had a really rough run with different doctors, but you can become your own advocate. Hopefully the toolkit gave you a few ideas for moving forward.