Sixteen years of misdiagnosis

New diagnosis and before diagnosis
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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.

1 Like
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Oh … what a story. I’m glad the diagnosis is approaching conclusion.

Best wishes.

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Thanks Vithfari.

Today I have some results from my last MRI’s.

“It appears to show periventricular demyelinating plaques and subcortical plaques … and are therefore unlikely to be very recent.”

“I spoke about a likely diagnosis of Multiple Sclerosis on the basis of his MRI spine and brain …”

“… he would be agreeable to having a lumbar puncture to try and cement the diagnosis.”

So regardless of whether it is MS or not, it looks like my symptoms wont be going away. I mentioned in someone else’s post if it is MS it is probably secondary progressive.

Now, my question is; would it be preferable for me to have MS + gastro-paresis or a mystery illness?

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Wow, I’m sorry you had to go through all that. You really have to fight to be taken seriously.

I would never want a mystery illness. Atleast if you have a label people will have a vague idea of how to help. With a mystery illness most people just think you are a nut job.

In terms of just personally, either with or without a label you will feel the same symptoms. I think with a label you can reassure yourself that you aren’t just going nuts.

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With or without a label I think I am still going to go nuts. Right now I keep going up and down and between;

Is this Really happening?

Is this a trick and it really is all in my head and they are just giving me something to focus on? (I am 16 years down the line remember)

If I had got treated at the start would things be better?

Would I still have a job I liked?

Would I have bought a house by now?

Would I have got a doctorite in Computer Science?

And to the last three I think, I know, I would have had achieved had I kept my health -I got all the modules bar one to get an HNC with 4 merit passes and only a 35% attendance. The only reason I didn’t get an HNC was because one lecturer refused to pass me in a core module because he did not believe I wrote the code I submitted solely on the fact I had only been in his class a few times. Ironically this is the same lecturer that talked me into joining his college after seeing my skills. I had 6 years management experience, picked up between the ages of af 15 and 23. Was signed out of school by the local authority when I was 15 because I was running a business and still passed all my exams at general/credit level. Never kept a job I didn’t like and never failed at any course I set my sites on.

Now I have to reconsider my capabilities. I have spent 16 years fighting this and trialling different methods. I thought it was going to be something that required a bit of surgery and physio.

My other problem is going to be trusting people to do their jobs as well as people in general. In just a few months I have gone from ‘nothing much wrong with you’ straight to 5 MRI’s and ‘we are pretty damn sure you have MS’

In a lot of ways it’s surreal.

I am not even on the list of potential candidates for a gastric pace-maker purely because I do not diabetes.