The Adventures of the Dizzy Daffodil

[Dizzydaffodil]

Hi everyone,

So happy to have found this website! I am a 34 year old woman, been ill for 13 years. Have gathered several diagnosis along the way: POTS, CFS/ME, ADD, CPAM.

And find myself once again on an heroic (but mostly downright depressing) adventure of trying to figure out what is wrong with me.

Even though my symptoms (chronic fatigue, orthostatic intolerance, balance issues, cognitive issues) are pretty much explained by the Pots and cfs, I really wanted to rule out any underlying neurological causes and then be done with my health search. so I finally had a doctor send me for a brain-mri and neurologist appointment last month.

On the mri they found hydrocephalus suggestive of NPH and partial agenesis of the corpus callosum. The neurologist I then went to see only said that it's probably congenital and might be causing my cognitive problems. But nothing about treatment or follow-up. My GP did not really agree, and so I am getting a second opinion for more clarity, but that appointment isn't till february 2025, so in the mean time I am (for the hundredth time) left to figure it out myself.

I feel like I'm trying to piece a puzzle that isn't one. I'm not really sure I have a question to put here or just want to rant a bit about how it's so frustrating to having to figure it all out when you're just not capable of doing so. I know I could just decide to stop trying and accept (which I had done for the past years), but if it wasn't for my own persistence I would be nowhere now, no diagnosis of POTS, CFS, no treatments. So it's hard to know when to stop...

Anywayyy, if any of this rings any bells with anyone, let me know!

Bye!

[pinkvision]

Interesting, if you have an MRI that shows NPH and partial agenesis of the corpus collosum then all your other diagnoses are just labels for the unexplainable. If you have NPH you should be sent for surgery to fit a shunt as an emergency case.

[Dizzydaffodil in reply to pinkvision]

Hi, yes I am wondering about the other diagnosis too now, Pots was established in a tilt test and I am on medication that did improve my orthostatic intolerance quite a bit. But the other ones I'm not so sure about now....I think the neurologist didn't think it was specifically NPH, but more mild hydrocephalus without fluid pressure or something. But I'm not sure what that means for treatment,symptoms,...My symptoms have been pretty steady for 13 years, so it's not really an urgent situation I think.