Quote:
Originally Posted by Cliffman
I felt the same way. I didn't even get the news directly from my doctor, the lab gladly emailed me the results. When I opened the report I had to read it twice before it fully registered in my mind. I will never forget reading "significantly reduced density" in big bold caps. I was crushed to say the least! Yet when I saw my Neuro doctor she was almost gleeful with the results. She said with a smile "this is good because now we have a diagnosis". She insists that patients with SFN can lead a very normal life if they just take the medicine. She made an comparison to someone that has high blood pressure. It can't be cured so you just take blood pressure medicine and all is fine. It angers me because I don't think one can compare high blood pressure to the hideous nature of SFN, especially given the drugs used are not truly designed for nerve pain.
Cliffman  |
My first doctor was the same. She was very cold and matter of fact. When responding to my distress at this unexplained nerve damage, she said "you are not in a wheelchair". "You will need medications to manage this". The meds she wanted to put me on right away were severe so I got a new doctor. He is completely on board with me not wanting to take daily meds, understands how awful it is and gave at least a little hope.
I think some people with SFN that mildly affects the sensory nerves might be able to live a normal life. Different people are affected more deeply into their nervous systems and they have different causes. For some it is just some occasional tingling and numb spots and for others it causes autonomic problems that cause malfunctioning of the very bodily functions taken for granted by those who "live a normal life". The pain can be debilitating to the point where it can knock one down to the floor or leave you holding onto a wall or counter top. If eyes are affected, the flickering lights, tunnel vision, blurriness can make it hard enough to walk, let alone drive. I could go on and I know I'm preaching to the choir here, but how is that a normal life?
If any of these doctors could experience a day like this, I think they would realize that for many people this is deeper than the findings of just "sfn" and skin sensations.