Forum

Neurologists - shocked

Hi all

I just had to post at how shocked I am at the amount of posts of people unhappy with the way they are treated by their Neuro’s. Being brushed off seems to be typical, a long time to be diagnosed another. I just don’t get it, this is their profession and to treat people who are scared and in pain like this is beyond belief.

I was lucky that I had private healthcare until being diagnosed but as soon as I went over to the NHS Neuro I did not like the way things were handled. My first appointment with him was a waste of time, he told me to go away look up the differnt types of treatments and come back and tell him what I decided. I was given wrong information by his Secretary which held up my funding and therefore took a long time to get delivery of Copaxone. I do feel for people that have not been diagnosed, the stress cannot help with your symptoms.

Rant over

Hiya

Yep-unfortunately the ‘bad-non interested neuro’ stories appear to be more common than the I have a ‘good understanding efficient’ neuro.

After saying that my GP is a human being with a real interest in supporting me through life with this MS malarkey

Ellie x

It’s a shame to read posts like this because I’ve seen four neurologists over the 13 years since diagnosis and they’ve all been fantastic. I was all diagnosed within a couple of months including an MRI and return visit for the verdict. Then I went back to him when DMDs became avalable on the NHS and he arranged for me to be seen two days later at a London hospital. No delay starting Betaferon either. Now I have an annual appointment which I look forward to - my current neuro is pleasant, thorough and interesting to talk to. This is all under the NHS, I’ve never been private.

I think we should be aware that happy punters are less likely to post about it, unprompted, than unhappy ones, so the sample on here is probably not representative. Think about it: which of these two scenarios is more likely to happen, is it:

(1) person has a good consultation and rushes to the MSS Forum as soon as she get home to start a new thread saying, ‘I am so happy that my neurologist is wonderful and inspires me with confidence,’

or

(2) person has a bad consultation and rushes to the MSS Forum to start a new thread to say, ‘My neurologist is a Martian with the empathy of Himmler and the bedside manner of a sack of potatoes.’

See what I mean? (I’ve just seen two neuros since I first went wonky in 1999, BTW, and they’re both fab.)

Alison

x

I’ve mentioned it before, I am a secretary in Aberdeen University’s Medical School. Neurologists come under the blanket heading of “Consultant” - as a general rule, these people (mostly men) are not nice for anyone to deal with - there are always exceptions to the rule, but unfortunately, these seem to be few and far between.

The neurologist who diagnosed me was an uncaring git who needed slapped, I rarely see a neuro now, it’s usually my MS nurse who is lovely, but in the last couple of years, I have seen a couple of (younger, female) neuros, and they were lovely too, even if I did put my foot in it and think they were students!

Luisa x

Perhaps those of us with good neurologists who get a minimum of a 40 minute consultation and can get through to them via secretary or MS Nurses anytime we need them, and who stop and talk to us if they meet us in the corridor, don’t post because we don’t want to make everyone else jealous and we absolutely don’t want everyone in a 100 mile radius changing neuros!!

Liz

i’ve been very lucky.

my gp is an absolute angel. he is very clever and if he doesnt have the answer on the tip of his tongue he knows exactly which website to look on and does it there and then whilst i’m still in his surgery.

he has learned an awful lot about ms, also ldn which he now prescribes for me.

my first neuro was lovely too. he always has time to listen and makes meticulous notes which have helped me to get dla.

once diagnosed i was passed to a ms specialist consultant, although he has a good reputation he is not as easy to talk to. i have only seen him 3 times in 4 years.

i still see my original neuro once a year. he has an outpatients clinic in bolton. i really look forward to these appointments.

i think this continuity is key in giving us confidence.

carole x

Hi Sue,

I agree up to a point, and disagree up to a point.

I do think (judging by the accounts we read here) that a lot of neuros have an atrocious “bedside manner” - or complete lack of a “bedside manner”. Or of manners full stop.

However, I do NOT think it’s their fault diagnosis takes a long time. I think this is due to the difficulty of diagnosis, and to the stringency of the evidential criteria that must be met.

One area where they may be at fault (mine was, although he’s nice), is not explaining in layman’s terms what these criteria are, and WHY it can take a long time to amass the evidence.

I had the impression mine already knew, on receipt of the initial MRI results, that it was MS, so I couldn’t understand his reluctance to commit to a firm diagnosis.

If he had simply explained to me that we had to wait for either another attack OR evidence of fresh activity on MRI, to satisfy the “multiple” definition of MS, I would have understood what he was hanging about for.

But as it was, I couldn’t understand why he seemed to “know” what it was - to the extent of telling me - yet still wouldn’t put it in writing. Because he’d already told me, and I knew they wouldn’t go round telling patients about serious conditions unless it was pretty certain, I spent a long time not being absolutely sure if I’d been diagnosed or not.

If he’d said: “Now my professional experience tells me this is going to be MS, but you’re just going to have to bear with me for a while, while I prove it”, I would have understood why he couldn’t jump straight in with a confirmed diagnosis.

Even my GP, when I asked her, didn’t know (or didn’t explain) that the reason my neuro couldn’t diagnose immediately was that the diagnostic criteria WOULDN’T LET HIM.

This is just not made clear enough, so a lot of patients get the impression there is negligence or deliberate foot-dragging, when in fact, the rules for when someone can be diagnosed are quite strict.

I have exactly the same neuro on the NHS as I formerly had on BUPA. My DMD “consultation” also consisted of two minutes to be told to go away and read about them, and let him know the decision.

But again, I think this is more reasonable once you know the logic. The NICE guidelines expressly say the choice of DMD (or of the first line injectables, anyway) should be left up to the patient. This is because there is no proof any one is more effective than any of the others, so it really is up to the patient which one they feel most happy with.

On that basis, the neuro really shouldn’t be lecturing the patient about which one they “should” choose, as there’s no clinical significance, so it really is up to the patient which one they find most acceptable (or least unacceptable) and which fits best with their lifestyle. Being invited to read about it and choose really isn’t such a dereliction of duty, when it’s supposed to be the patient’s choice, and NOT the neuro’s.

If my neuro had discussed it with me in more detail, I imagine it would still have boiled down to: “Well, they’ve all got pros and cons - do what you think best.”

He could have talked me through all of the individual pros and cons, but I imagine he assessed me as being perfectly capable of reading and understanding them myself - which was true.

So although it seemed a bit abrupt at the time, and indeed, a waste of a journey, I don’t think I was left short of any information I needed.

Tina

By the way, I wouldn’t want anyone to think I do not take seriously the horror stories one reads on here all to often. Many have made my blood boil. It’s just that I don’t think they are likely to be typical (I hope not, anyway.) Anyone looking ahead to their first neuro consultation should not certainly not expect to be entering an ogre’s cave.

Alison

x

talking about this to MS nurse,she basically said they feel helpless,if u have progressive MS there is nothing they can do,and its up to MS nurse to help you,but surley they should have basic people skills,after all they are telling people they have a life changing illness

I did say to my GP that neuro’s don’t seem to have great communication skills (I was being polite) and she said they are not known for ‘bedside manner’… and that they are scientists and only into facts.

That has actually made my neuro visits a bit better. I don’t now expect him to be interested in how I feel about my symptoms; I just give him a quick list of new symptoms and things that have progressed and I know I won’t get sympathy only advice on med’s I could try.

I have PPMS and think, as someone else said, they do feel helpless. So little they can do. So I go with a different attitude (ie the hospital has a good coffee shop) and don’t expect him to be interested in my feelings or to be particularly friendly or polite. Shame really.

I once saw a registrar who was so nice and calm and really listened to me. He couldn’t do anything to help but I left his office feeling a million dollars.

Pat x

I think that any doctor who chooses neurology as their specialism must have a very strange outlook. Yes, they keep their money grabbing hands clean,but do they ever have a good result with any of their patients???

They deal with Us, Parkinsons, Dementia,Huntingdons,Motor Neurone Disease etc etc(apologies for my ignorance).The overall picture is very gloomy,so it baffles me why an individual would choose neurology.Must be the pay and the relationship with the drug companies.

Wb

Woblyboy - l think the neuro l have had the unfortunate experience of seeing - has prescribed meds for all the illnesses you mentioned including epilepsy/aids/bi-polar - But when l mentioned Vitamin d3 - he said ‘drink more milk’.

F.

Well I thought my neuro was not being helpfull to me,I asked was it possible to give me somthing for the spasms and pain,his reply was choose wich one you cannot have both,I chose pain and Amitriptyline was prescribed.

However then my doctor had written to him,emailed him and many phone calls yo his office and no reply.My doctor was being realy great and fighting my corner.

Then he phoned my doctor and explained he had been fighting for me and all his MS patients to have the LP done sooner BUT the hospital would not budge on getting anyone seen quicker.We have to wait at least 6 months before we get an appointment for an LP.

Maybe Singleton Hospital in Swansea dont like us from Camarthenshire LOL.

So I though gosh I was thinking bad of him and he realy was trying to help me and many others like me.

My doctors have been FANTASTIC and I could not wish for better.

Charlie,x

Cheeky, up himself, git of a consultant, drink more milk indeed. Honestly, I see it with the med students - as soon as it sinks in that they are going to be doctors (about 4th year), they develop a God complex, where they believe that lesser mortals do not have a single worthwhile thought in their empty heads. When these God-like creatures become consultants, it magnifies their sense of self-importance, and they become people you wouldn’t want to be around. Also, they seem to develop an affinity for polkadot bow-ties and that’s just weird.

L x

I am glad there are still people wanting to go into branches of medicine where not everything (very little, in fact) is already solved. Without that, we would have no hope of a cure, or even new approaches to symptom relief.

It would be deeply sad if illnesses currently seen as “hopeless” were rejected as fields for study and practice. What if no work had been done on smallpox, because nobody was interested in a lost cause?

T.

Nicely put Anitra.Humans “Go over the hill”,but after 80+ years with MS the Neurotics don’t appear to have got far,and I don’t think that Fat Pharma really wants a cure for US with Global sales being £6 Billion annually and rising.

Wb

ps Apparently there are breakthroughs with Motor Neurone Disease at the moment,and maybe there may be ‘something’ for US in amongst it all

I just had to say that I feel very lucky that I have a really good neurologist, and my MS nurse is lovely (only seen her once as the clinics are held 40 miles away!) but have exchanged many emails with her about one thing and another. My GP is very sympathetic but I don’t think she knows a great deal about MS. She is a gynaecologist after all! My PPMS dx start to finish was a little over 6 months. I thought at the time that was an absolute age, but since I’ve been on this forum, I count my blessings because there are so many who have been in limbo for such a long time. I agree with earlier comments that people like me do have a touch of guilt that we have had good experiences. There is some good out there, just sometimes a bit tricky to find! Anna.

my neuro is fantastic. I will say hes always running about an hour behind but thats only because he seams to have all the time in the world for his patients. And i never mind waiting because i know i get just the same treetment as the rest

Alison100

Yep-you sum it up nicely

Ellie x