Neurologist appointment

So, I went to my Neurologist appointment on Friday, and I have never been so insulted or angry in my life.. And that’s saying something! This is a long blog, warning in advance 🙂

It started out with him questioning me that I was Bristolian or not as my Father sounded it but I didn’t. I said I was, born and bred but don’t have much of an accent. He then said, there’s no way I’m as I have no accent.. I speak better than him! What the heck that had to do with anything I do not know, but he was rather adamant in arguing his case. I knew then and there I might have a problem during my appointment, and I did.

He didn’t read my notes, saying he didn’t need too. When I explained that I had been diagnosed through a specialist with ME and Fibro he replied that he would decide what I had, not the specialist.

He then asked questions about how I’m affected, when it started etc.. Then examined me briefly.

His decision.. I need to cut down a quarter on my meds before he will see me again as he can’t see the ‘real’ Stacey only the medicated one.. Also that I might think about seeing someone in physchiatary.

I stopped him at that point, saying the reason I look like a druggy today is because I haven’t slept in two days.. Cutting my meds to a quarter would take me back a year and leave me totally bedbound and in agony again. That is he suggesting what I have is psychosomatic?..
He flustered and spluttered and said yes he thinks there’s a chance it could be..

So apparently I’ve made myself like this, the spasms, cramps, loss of feelings in my limbs, sezures I have somehow created all this through the power of my mind. I then explained I am 4 years trained in therapy, physchiatary, psychology.. That it would be impossible for my mind to make my body jerk, freeze etc

He continued to bluster, and became annoyed that I stood up to him and outsmarted him. He said oh but I’ll give you bloods today and a flicker text for your eyes! Yes, I replied then it’ll be 3 months before any tests, help until I’m ‘clean’ of meds and the psychosomatic illnesses I have.. Regardless of two specialists diagnosing me you, you sit there and instead of helping me with your ‘experience’ and ‘qualification’ as a neurologist you use arrogance, ego, a lack of psychology, no empathy, no reality of the truth that you are not only looking at but which are in the notes you so easily dismissed.
I will have your blood tests, the same I’ve had for over two years and flicker test but I will not be patronised by someone who clearly has no interest in giving me the tests I actually need to rule out MS and epilepsy. I came here for help and advice, not even a cure but I now leave with a sense of frustration, anger and lack of respect for someone who has not only treated me as though I am a junkie, but as someone who you won’t help until I do what you want.
I may not be qualified as you are, but if I were and the tables were reversed I would not treat you as you had me.
Maybe before you see me next time YOU can not only look through my notes but polish your bedside manner because it is sadly lacking.
Good day.

I wheeled myself out and used every bit off will power not to use my one good hand and put it round his throat! Lol

I spoke to my dr about it and she totally agrees with me, that cutting my meds back will cause huge bad effects on me and that only I can decide what to do and she will back my descion whatever it is.

I’m so thankful for her, for someone in the medical profession to back me and laugh at the total idiocy that I have made myself like this. She found it as ridiculous and said, well then he is also saying myself and the 4 doctors who’ve been called out to see you when you’ve seized, had spasms etc are fuelling your ‘derangement’.

I will see him in 3 months and prove him wrong. I will have every test I can and if he still refuses to help then I’ll put in a complaint against him and change to another neurologist.

My body may be disabled but my mind and myself are not.

I’m a person, a human being, not a statistic to be labeled psychotic put away in a file as quickly as possible and forgotten about because it’s easier than putting the work into finding out the truth.

I’ll get the truth and diagnosis I need if it kills me, because this is my life, this existence has become my life and I want to know why, what is going on so I can work with it and live to the best ability I can. I don’t care if someone has a thousand letters after their name, until they truly understand the hell life can be living with chronic conditions they don’t get to patronise us or push us aside. Treat us as though we are ‘mental’ and put us into counselling to cure the psychosis.

Yes it’s difficult to be strong when you’re so unwell and they know this. This is the first time I’ve ever had someone suggest it’s all in my head, but I guarantee it’ll be the last time.

🙂