Trip to the neurologist

Warning: strong language ahead.

I have just returned from an appointment with a neurologist. I am very severely affected so had to attend by stretcher ambulance. I have barely left my room for years (only been to the bathroom a handful of times), and haven't left my house at all for even longer.

I survived, so that's the good news. It was also amazing being outside. As we passed through my front garden I was hit with all these smells and sensations that I had basically forgotten existed. During the trip I was watching the clouds overhead and seeing planes go by. It was beautiful - it was like seeing it all for the first time.

The neurologist was, to put it in mild terms, an absolute raging cockwomble. Like a complete and utter dick. I have never met such an arrogant doctor in my life. The first thing he said to me after the introductions was "I don't believe in ME", and the appointment spiralled down from there. He went through all the memes these doctors have: no organic illness, graded exercise, deconditioning. He stopped short of explicitly stating I am a psych patient, but it was implicit in the way he repeatedly stated there are nothing wrong with me organically.

I wasn't even there to talk about my ME anyway. It was a completely different problem I needed to see him about. He gave me a cursory examination then said there's nothing wrong, go do GET. His rationale was that he had never seen my particular symptoms and were not part of any know condition, ergo that means they must exist in my mind.

I made it clear I was dissatisfied with this explanation, and that perhaps the cause might be something novel. He started listing his qualifications and the amount of time he has been practicing as if that made him somehow omniscient. He asked me what I wanted out of it. I said an MRI. He tried to put me off it by saying it would be a stressful experience and if I found that appointment difficult (I did) it would be even worse. I told him I still wanted it. He said "fine", like I was just some troublesome patient and if i wanted to put myself through it then what does he care.

We also had an argument about graded exercise therapy. I said there was no good evidence graded exercise therapy was safe or effective. He told me that on the contrary GET was the only thing we have evidence for. I said no, there is no GOOD evidence. He said we could argue all day about the quality of the evidence, but that we'd just have to agree to disagree. This all took place whilst I was so ill I could barely move.

Once I've gotten what I want out of him I will write him a letter detailing why he is wrong about GET and the nature of ME. I don't expect a reply.

TL;DR: Made an expedition to hospital. Trip was tough but also enjoyable. Doctor was the worst kind of doctor. Stood my ground and got what I wanted anyway.


Sorry you had such a difficult experience. Unfortunately, unless you visit an actual ME/CFS specialist, you should assume that your doctor will know almost nothing about the disease and possibly not even believe it exists. This is not entirely the doctor's fault as it has to do with their medical school training and patient experience. Many patients on the severer end are far too sick to visit a doctor or avoid it based on previous bad experiences, and the others go to a whole variety of specialists, so there's no consistent patient stream to a specialist doctor like a neurologist. So, as a result, he sees you as a rare case, and since he hasn't been trained in ME in his specialty, he concludes that it must not be a real disease.
@herpesbaby I don't really want a connection between my real identity and my online identity - particularly because this is a healthcare forum. Posting his name would likely make it appear on Google, which he would no doubt see and be able to put two and two together. I also need to maintain a patient-doctor relationship for the duration of the time I am under his "care" (if that's what you can call it), and bitching about him online isn't conducive to a constructive outcome.
Sorry you had such a crap experience- am guessing you are in the UK as I am.Thanks for your post ( I love your description of seeing the outside ) and thanks for introducing me to the term 'cockwomble'!
@Cheesus you are a hero for surviving that horrendous experience. That neurologist is definitely a cockwomble - love that word. Your description of going outside brought tears to my eyes. I hope it hasn't set you back too much. Good luck with the scan - let us know how it goes. Best wishes.
Well done on getting through that and sticking up for yourself so damn well. I'm so impressed with your attitude about it after the fact, too. Sending you loads of positive vibes and thoughts if you need or want them.
I too really loved reading about your taking in all of the outdoors. May the positives of the entire experience keep in your mind for a while yet :)
Thank you @Iafarfelue and @trishrhymes. Your kind words are very much appreciated. I am pleased you both enjoyed my description of my adventure into the outdoors. What is such a mundane an ordinary experience to so many was completely unique and awe-inspiring to me. I will cherish those moments and will hopefully expand on them in the future when I can finally improve :)
You know they are not a good specialist when there own ego cannot tolerate anything but their on voice and opinion.

MRI's are not that stressful. I don't know what he's talking about. Sure you hear some loud sounds. Some people that are claustrophobic might have issues, but honest I found it fine and now I have a peace of mind. I didn't have any lesions, but shows that my discs in my back are deteriorating, so explains why I get back pain sometimes. So I'm glad I had a MRI.

Sounds like a pathetic neurologist. I have come across so many incompetent specialists it's not funny. Sorry about your experience, I personally would try to find someone else.
Cheesus, it's infuriating when doctors imply that because they don't understand a condition that it must not exist. I think a lot of us have had to deal with that.

I love the word cockwomble! You people in the U.K. have such a colorful array of insults to choose from. Our American insults pale.
Cheesus, to be so sick and still stand up for yourself so well (metaphorically speaking of course), and to maintain your sense of humor to boot is no mean feat -- But we should not have to fight for every scrap of legitimacy and help we need -- some day I think we will look back at these times as the bad old days when ignorance and arrogance prevailed. Your spirit (and language!) are inspiring - cockwomble indeed! I hope your next trip outdoors will be for something entirely more fun --
So sorry you are so sick. It brought tears to my eyes hearing your enjoyment of smelling the outdoors and seeing the clouds. I am glad however that you stood your ground!! Good for you!
Bless your heart! I feel like each and every one of us has been through any experience similar to this. What I can't understand is why can they not see we are in pain? They must think we are making it all up. I'm glad you were able to get something out of it...
Cheesus, I have been wanting to reply to this blog post for a while and did not get a chance. I was so struck by your description of being outside and seeing the clouds like it was the first time and that you still have the ability to feel joy in your heart. I am sorry the Neuro was such a cockwomble and thank you for introducing me to this great new word which I have Googled (and can honestly say that the Neuro's in the U.S. are cockwombles as well). I hope you will be able to get the MRI and that you were able to rest after the appt. Good for you for standing your ground.
"The neurologist was, to put it in mild terms, an absolute raging cockwomble." <-- new one on me, that's a beautiful phrase.

"He started listing his qualifications and the amount of time he has been practicing as if that made him somehow omniscient." <--- ooooh, we got a bada$$ here.

If you don't mind, I'd love to hear the results of the MRI -- CCC says "white matter hyperintensities" or "white matter lesions" but I've never seen this evidence gathered and peer-reviewed...
Thank you all for your kind words of support. It really does mean a lot to me!
Well done Cheesus, still remember my first walk outside, felt like a different planet. If you have the energy send the pdf copy of PET scans of ME patients ALL with brain inflammation to the dickweed excuse for a doctor. Good luck.
Hopefully you can get this Dr to send you hard copies of the results, "so that you can share them with other doctors." Hopefully he won't insist on you attending an appointment. If he throws up that barrier, perhaps you can find a "patient advocate" to negotiate the release via signature documentation.
Hope you can somehow get out to your garden more often. It sounds very healing.
"Once I've gotten what I want out of him I will write him a letter detailing why he is wrong about GET and the nature of ME. I don't expect a reply."
That may not be the best use of your precious time. Sounds like beating your head against a wall. Do take care of yourself first.
Cheeses.. My first two visits recently to a neuro were .....disappointing. I just want to congratulate you for your spunk and courage by getting out of the house as well as standing up to the doc. I think we all know how much energy it can take to do the slightest thing, and having to deal with dr mentality takes the cake!

I also wanted to give a shout out for following up with a letter when you have gotten what you need from this guy...( unfortunately the attitude we have to use with them to survive) but only if you have the energy. But the times I've stood up for myself may not have changed the facts, but it sure left me feeling more empowered.

I had a had a dr who 1) when passed out from a sitting position during a blood draw, looked down at me on the floor and told me I should talk to a psychotherapist about that, and 2) in the middle of a painful pelvic exam asked me how my psychotherapy was going! I decided to make an appt just to talk to her...With my red 'power suit" on and dressed to the nines, I explained to her that i have been a psychotherapist in private practice for many years, and that her behavior and words to me were completely inappropriate, unprofessional and intrusive and how insensitive it was to ask a patient an open ended question about their emotional state while performing a painful exam.

She was clearly taken off guard by my assertiveness, as her mouth dropped open and she couldn't find anything to say but repeating she was insensitive and intrusive. It was worth the cost of my copay to have the last word with her with my professional clothes on, able to look her in the eye face to face as opposed to laying flat on the floor or an exam table.
I had a similar experience with a Neurologist about 6 years ago. One day in the future when there is an avalanche of scientific data identifying the physiological cause of ME and a proven pharmaceutical treatment regime I will write to my very own cockwomble neurologist and set him straight. This was a plan I hatched after I left his office being pushed in my wheelchair.

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