I had no idea some people had such difficult neurologists. My neuro has a bit of a wet fish handshake, and is very focused on DMDs perhaps sometimes to the exclusion of current symptoms. But that is the absolute worst I could say about him. And until recently, I had a great MS nurse to help out with day to day matters. I also see a rehab Dr and physios etc. So I’m exceptionally fortunate in my medical professionals. I even have a nice GP, it’s a bit difficult to get appointments without waiting about 3 weeks, but she knows who I am and is helpful.
The only thing I would say for those of you suffering under the ‘care’ of distant/difficult/negative/nasty neurologists, is to echo what Dr Geoff said, use email. Create an audit trail. If you phone the hospital and get through to your neurologists secretary, ask them for an email address to which you can address any questions you feel have been ignored at your appointment. Often this email address will be the doctors secretary or PA, but they can forward to the Dr concerned. Otherwise, write a letter to your neurologist and ask in that letter what you need to know. If you continue to get very little assistance and either can’t change neuros or need to stick with the one you have, there’s always the PALS service (Patient Advice and Liaison Sevice). I wouldn’t start off there, try to make your neurology service work for you first, but ultimately, you need to feel that you are being treated as an individual and to have your concerns and questions answered.
I used to have a terrible neuro. I went to my GP with the name of a London neuro who had been recommended to my husband. My GP said I was entitled to a second opinion and referred me to the London neuro and I have been seeing him ever since. Is it possible for any of you who have a terrible neuro to see someone else? You could ask for recommendations for good neuros on here.
I believe that people should leave terrible neuros and write a letter of complaint, if you dare. I haven’t dared so far, in case I ever need anything from a local neuro. If I ever get confident that the Cladribine has cured my MS, then I shall write the letter of complaint in celebration.
I have always thought that untimely I will be ‘blamed’ for my increasing disability! It makes me furious I now walk (just) with 2 sticks. When I was first diagnosed 2007 I phoned the duty neurologist at hospital, unable to believe that this was the best they could do! I was told to ‘grin and bear it’ we are so much best off with this forum.
Neurologists are a specialised subspecies of the medical profession. In my experience (and that of many, many others) they are very task orientated and are perfectly happy spending their days handling the 3lbs of grey matter wearing nothing but a white lab coat and latex gloves. They get off by turning this lumpen mass of putty around and over, to and under; fingers probing at the amygdala and poking at the folds of the cerebellum with the haughty distain that only a product of the public school system can carry off.
They treat people in the same manner; as if addressing some wayward schoolboy who has been caught in the act, behind the bike sheds.
The neurologist is only interested in the structure and function of the Human Brain (oh, all right, AND the spinal cord) and (Yes? Alright! AND the nervous system). Unfortunately, the only way in which neurologists get to see a Brain is by getting one off a human (yes, it is legal) and chopping bits off until they are happy and before starting on a new one. It is a bit like the way small people regard Christmas presents; they’ll play with one until their short attention span gets the better of them and then move on the next one. It stands, therefore, that the only Human Beings that neurologists get to meet are Dead People.
It goes without saying (so I’ll write it), that anyone who studies Dead People for seven years, before getting a career studying more Dead People, is at a major disadvantage; as anyone expecting a neurologist to show any empathy, for someone with a neurological problem, is going to be sadly, badly, let down.
Next week: The mating ritual of the neurologist. (It’s a very short article).
It is so sad a d very very wrong, that so many neuros are failing in their people skills.
It leaves so many of us dreading upcoming appointments.
Over the years I’ve seen around 17 different neuros .
Let me give you a little info on some of them and how they made me feel. I’ll name no names to protect the innocent!!
Very, very thick foreign accent…I had no chance of understanding what he or she said. This left me clueless.
In front of a student doctor, he .said to me ‘Oh yes, I remember your MRI…’ as if pal! You didn’t remember my name!
Crouching down and whispered to me, 'Hello Pauline. My name is …a d I’m here to help you '. Eh? Never saw her again!
This one was my 10th neuro, who said ’ After all these years, I would be furious if I were you, with no diagnosis’. I replied, ‘But I was diagnosed last year’. He said ‘Oh, were you?’ Duh!
Enough already. I’m coming out in blotches just recalling It all!
There is more, but I don’t want to bore you rigid!!
I saw the loveliest neurologist ever. This was 5 years after my original tests showed I possibly/probably had MS but was told “you don’t have MS”!! The lovely man (for he was a man and lovely, did I mention that) was aged about 60ish, possibly older. He arranged an MRI after asking me (yes asking!) what did I think was wrong, to which I replied “I think it’s MS” and he replied “yes, so do I”, very, very kindly. When I went back to see him he showed me the MRI, pointed out the lesions, explained what they were. Told me it was definitely MS.
I thought, what a lovely man, aren’t I lucky. Because the several neurologists I’d seen 5 years earlier were not such lovely men (although they were all men).
He then said “I’m retiring next week! I’ll refer you to another neurologist!”
“Damn! I thought! Just my f*#^ing luck!”
In actual fact he referred me to the London Hospital for Neurology and to the most wonderful, lovely (rather handsome) Dr Giovannoni. Who is now very well known for being an exceptional neurologist. So I retained my luck.
Until I transferred to a more local Neuro, and truly I have no massive complaints but I was utterly spoilt by the lovely neuro and Dr G.
Sue, you and I have been lucky, haven’t we? The first neurologist I saw was exactly like your first, down to the fact that he was on the verge of retirement; his replacement is lovely too. There are some nice ones out there.