From neuro to zero

As long-term readers will know, I was attending a neurology clinic in Beaumont hospital... Well, kinda. Over three years I had about four appointments. Extremely slow, asked the same questions each time and with... well, lets just say the term "neurologist" is used quite loosely here in Ireland... Rather than repeat myself too much, here's some Facebook posts and links on the subject:

⚚ Click here to read about my very first neurology appointment ⚚

⚚ Click here to read about my second neurology appointment ⚚

I don't think I've really any other posts detailing them... the third appointment was not only quick, but a disaster, and not something I really like to discuss:

Firstly, the absolute prick, gawked at me when I entered the room, like a bully in the playground staring at the cripple kid -"What's the cane for??" he asked, sounding grossed out (seriously!). Like he hasn't seen a disabled person in a neurology clinic before. 

He hadn't looked at any of my notes and instead a few minutes later asked, "what's wrong with you?" -again, sounding pissed off... I replied that was the reason I was going to these appointments (duh) and hadn't been fully diagnosed yet (except the birth defects, obviously). He then got really flustered and

"I'm not qualified for this" -A tale of a fragmented and centralised health system

Chapter 1.

The Clicky Hip That The Doctor Missed 

Once upon a time, there was a girl, and this girl lived in a land of infrequent and inconsistent health care. As the girl grew, she slipped through the gaps -Being told treatment was too late, there were other issues at play, she was "wonky" and they weren't qualified to help... Just beyond this place, in various reaches of the further land, many children with similar issues, and many adults too, were receiving regular health care. Surgeries, rehab facilities and specialists galore. They lived quite a different life because of this... It was only at the age of 30 that the girl finally realised the truth. The truth being: National healthcare was a lie; her circumstances had resulted from her address.

I have always had hip dysplasia. Always. Doctors may have thought I was a dumb child, so referred to it as being "wonky", or being "slanted". Many hear of it and comment "Oh yeah, clicky hip I think it used to be called?" and generally follow that up with how it's no big deal, loads of babies get it... etc., etc., and this can be the case. When found at birth or shortly after, a harness is usually fitted. Annoying for the parents and child, but extremely vital for the child's correct growth. The issue is that the hip, usually either in the womb or at some stage during the birth, comes loose of it's socket. Generally treatment begins straight away -with a harness, regular check ups and x-rays and possibly surgery starting around 2 years of age, sometimes before, depending on the patient. Some don't need any surgery or just one surgery, others need several surgeries, throughout their life spam. These surgeries are to help the hip be more stable, to save the hip from replacement for as long as possible. This can include strengthening the joint and deepening the socket so the hip will sit better in place. Now, without this treatment -as in my case (as the doctors refused to even look at me until I was older and walking funny/ limping)- the body creates

Neurologist, round 2

So after a year and a half since my first appointment with the neurologist, I *finally* had my second! Hurr-bloody-aaayy! Nothing incredible to report, but as I'm meant to mostly be blogging about my diagnostic journey, then it's worth a mention...

She would like to monitor my BP for a few days to see how low it is. Not the all important, illusive tilt table test but it's probably the next best thing! So at least we are finally getting somewhere. She also wants to see MRI results of one I had on my C spine a few years back (I was given a CD, hopefully still have it somewhere). At the time they took images of my brain but didn't actually read them/ include them in their report. They were mostly concerned with the C spine and any damage done to the shoulder. It's just cautionary, rule out any nastier reasoning for being dizzy, clumsy and the general lack of coordination.

Here's a photo from that MRI that I do happen to have. I look dam sexy as a size 0.

Not sure yet when I'll