Chiari Malformation is alledgedly a rare condition. I saw a statisitc that around 300,000 people in the US have it. Doesn’t sound terribly rare to me. But still.
Symptoms for Chairi can be kind of vague and suggest other vague conditions. Typically sifferers are often misdiagnosed with things like MS and CFS because symptoms overlap. Hmmm.
I found a symptom list I hadn’t see before courtesy of Live, Love, Laugh and erm, I seem to have all of the symptoms on the list. Not necessarily all of them all of the time. Things to do with motor function and balance and so forth tend to come and go (come with bad days, go with better days).
But I also have other symptoms which aren’t on the list – but are on the list for CFS. So I ask myself is it just CFS or can I be unlucky enough to have something like Chairi Malformation AND IBS.
I also ask myself at what point do you push for a referral to a specialist? Also, do you confess to your general practioner why you want one? (“I stumbled on a site with a list of poorliness a bit like mine and I’m worrying and yes I know self diagnosing off the internet is dangerous but settling for a vague diagnosis of a vague illness could be just as dangerous …”)
I wonder if it’s better not to know sometimes. I wonder if the internet helps to give us more information and knowledge or just scrambles our (by which I mean my) brain.
Maybe I could just lay out cards with each condition on and divine which is my diagnosis. It may a more thorough diagnosis than most GP’s bother with. I’m not sure that’s fair. Oh, maybe it is.
I’m not posting because I’m expecting answers by the way. Just I need an outlet that doesn’t let this fester away.
Plus I thought I’d do my bit to tell folks that Chiari is a possible explanation for some people diagnosed with CFS and if you want to find out more then those links will be a start. But don’t le tit drive you crazy. 😉