I have been waiting months for this Neurology appointment… and for what?
This neurologist concluded basically that I’m not sick, I’m just depressed.
She denies that ANY of my symptoms are related to the intracranial hypertension and declares it completely under control because I don’t have pressure headaches and my eyes are mostly fine (just slightly elevated pressure there too). Except I didn’t have pressure headaches before the lumbar puncture and didn’t have any significant eye problems at that time either – but my pressure was elevated. That’s an objective, empirical measurement. Normal intracranial pressure is up to 20 cmH2O. My opening pressure was 29 cmH2O.
She tells me it’s not even a very elevated pressure. But it is elevated! It’s above normal! It is unequivocally in the intracranial hypertension range.
She denies that my memory loss, brain fog, confusion, et cetera could be at all related to fluid inside my skull squeezing my brain.
What she thinks is far more likely is that depression is causing me significant memory loss and trouble thinking. These are not symptoms of depression though. Even if depression can have some effect on memory and concentration, but it is not a normal, standard symptom of depression to forget your name, date of birth, address, common words regime you try to speak out right, et cetera. It might impact concentration but it doesn’t have the effect of severe brain fog, confusion, and dizziness. Depression definitely doesn’t cause yuppie legs to give out. It doesn’t cause vomiting and weakness from physical activity. I work in mental health, these are not signs of depression, they are signs of physical illness. And obviously I can’t treat myself but my therapist and psychiatrist both agree that it is ridiculous to claim my symptoms stem from mental health. My mental health evaluations do not in any way indicate this to be the case. Though my depression treatment does indicate that the primary source of my depression is my physical health problems and dealing with doctors.
She suggests I need a good PCP who can put together all the pieces from all the specialists I’ve seen. Which I find an ironic comment as she tries to pass me back to gastroenterology who’ve already claimed “not us” too. No one is working together here. Everyone is just passing me of to someone else to deal with so they don’t have to be bothered.
I ended up crying during the appointment which I hate. But it’s so hard dealing with being this sick everyday and having doctors tell me I’m perfectly healthy, maybe it’s just depression. (Which btw we know many disorders common in women were written off by doctors as psychosomatic for years, decades, before someone realized, “oh hey, this is actually a thing! Who knew… other than all the women who’d been telling us for decades that they are sick and this is real. But those crazy ladies, can’t trust what they say.”
It gets in my head though and doctors make me feel crazy. Maybe this is just in my head. Maybe I’m not really sick. Maybe it’s unrealistic for me to hope and expect to not feel awful all the time, maybe what I need to do is just push through it harder. Maybe everyone actually feels this way and this is totally normal and I’m crazy for seeing something wrong with it.
Then I do some reality testing. Is it normal to feel this way? I know for a fact that until relatively recently I didn’t feel this way all the time, so obviously this isn’t just standard. Do other people collapse and vomit when trying to do anything slightly physical? No, they don’t. When I put these thoughts to the test, logically they don’t hold up.
That doesn’t mean doctors don’t still make me feel crazy and hopeless.
Having doctors deny anything is wrong is, psychologically, so much worse than if they say “something is obviously wrong, but we don’t know what it is”. The latter says, ok, well, let’s work on how to manage living with this then. The first says there is nothing that needs to be managed.