Today was supposed to be the day were i finally name the neurological illness that has taken refuge in my body or at least get a better understanding of it.
I live in a village called Thornton. Blackpool Victoria Hospital is my local hospital but they also use other hospitals in different regions to get access to specialist etc but they are on different computer systems so one consultant rarely knows what the other is doing.
Your GP practice is supposed to keep on top of your treatment etc . I have been aware that i have been going around in circles for 7 years. I have asked my GP to overlook everything but he is so busy.
I ask is it so wrong to want to understand why your body is broken? That’s what Doctor’s are there for isn’t it? It’s not what is happening. You go to one specialist for one bit then another for another .
Nobody takes the lead and orchestrates it all . Nobody looks at the bigger picture to get the diagnosis. Nobody guides you through anything . It’s like a whirlpool of appointments, injections etc but no understanding.
All the medication that im on that has helped me enormously, was stuff i have pushed for because I’ve been ,this isn’t working let’s try etc……
Today’s appointment at Salford was arranged because i go to wythenshawe hospital the lung unit. I have been telling them (everyone) about my breathlessness.
Before i got sick i was really active but over the last 7 years the weight has piled on. Doctors assume that the weight is the cause of the breathlessness. I constantly have to keep reminding them that the weight gain is a consequence and the breathing was a problem before i got fat.
Finally they found the cause of my breathlessness (only took 7 years ) to diagnose vocal cord dysfunction. This make sense as i get spasms everywhere else in that area of my body really strong ones.
I thought this was the reason i was seeing Dr Roberts today as he implied he would get to the bottom of things and take a look at the overall situation.
We travelled to Salford today. Flipping set off at 7.30am. Got there mad dash around the hospital. Dr Roberts didn’t even speak to me it was one of the younger Drs that work with him . He looked like Jim from American Pie
It didn’t make it any easier to take when he said that because you are under Dr Gall at Preston and she’s mentioned Functional Neurological disorders (like 4 years ago) we’ll just stick with that.
I was like …wtf ….(in my head) i didn’t ask to come here. Ffs Jim what was the point ?!(in my head the ffs)
It’s almost as if nobody wants to or has the proper time to practice medicine these days.
So i asked him who sorts my treatment plan out ? Who’s in charge ? Who can i turn to ?
The saddest thing is my kids are growing up so fast and i just wanted some help and support to understand and treat my condition so i can get the most out of my body. It needs to happen.
Well all i can say is stuff the lot of you I’ll bloody keep doing it myself . I’ll order all my paperwork and scans results from the different hospitals and I’ll work it out .
Im sick of waiting . NHS you are a let down . The reality it you waste so much money going around in circles achieving sod all . You have fantastic tools too many unqualified craftmen that can’t use them just making a mess but earning big bucks.
I’ve no idea who’s supposed to be doing what . Just going to keep going to the gym and get as strong as possible.
So mad 😠
Monday 5th March
I went to my GPs on Friday. I’d already written an email awhile asking him to look into all the different injections I’m having in my head as I’m not sure if I’m being overdosed with steroids or not. I also wanted to talk to him about coordinating my treatment again.
He said that it was an impossible task. He’d been through every letter and it says that I’ve had injections but not where, what or the amount.
Also most of the other hospitals don’t write to him or if they do it’s months after , so it makes it difficult to coordinate everything.
So how is someone supposed make an accurate diagnosis with only parts of the jigsaw?