I’ll give a quick run down of how things were and where I am.
In summer 99 I started having problems eating. I went to the doctor who said I needed to get a job -even though I was working and had to take a day off to be there.
2001 I had to give up my dream job at IBM. Went back to the doctors and it apparently was because I had been unemployed and needed to get out more.
2003 I had to give up my pursuit of a PhD because I was randomly sweating, fatigue, not eating, massive random pain, staying awake for days at a time -lots of things.
Between then and 2011 I had been sent for colonoscopy, endoscopy, barium meal, pain clinic, psychiatrist, 2 psychologists, 3 physiotherapists, 2 gastroenotrologists, addictions clinic … Anything but the actual tests I needed. Although the barium meal taking 3 hours longer than average should have been a give away to anyone with any sort of medical qualifications.
For many years I was labelled a depressed alcoholic -even though I went to the addictions to prove I wasn’t an addict of any kind. That pulled social work into our lives and they basically lied so that they could make it look like they helped me -even though I didn’t require the help they were throwing at me.
So I switched GP’s surgeries, got referred to another physiotherapist who told me she had met many people like me and it was almost like a lifestyle choice. I chose to feel that way -apparently.
So after an argument I got referred to a neurologist who diagnosed me as having small fibre neuropathy.
By this point no less than 10 specialists told me “I am not sending you for an MRI because I don’t think it will show anything.” I was also referred to another gastroentorologist.
So to shut me up I got a gastric emptying test. When you are still there 45 minutes after the person that was 2 minutes in front of you, you know there is something wrong. It showed “significantly delayed gastric emptying.”
Then I got another neuro consultant that sent me for my first MRI.
Within days I was at the GP -for a repeat prescription and already my results were back (which I duly got a copy of) and that night the neurologist phoned me. The MRI showed plaque on my spine. So more MRI’s on the brain with and without trace.
And yes; it showed lesions on my brain and spine.
So for the sake of 2hrs of tests I had been labelled a waster for well over a decade and if I hadn’t fought I would be getting treated for mental health issues instead of the very real physical problems I have.
Next month I get a lumbar puncture to see if it shows I have MS, it is the last test and everyone is 99.99% sure I have MS and gastro-paresis.