Does having a delayed diagnosis of MS matter? #ClinicSpeak #MSBlog
In this week’s BMJ there is a short case study of a person with a delayed diagnosis of MS. Does it matter?
Kieran Walsh. Are you “satisficed” with clinical decision support? BMJ 13 May 2017: page 282.
Excerpt:
….. A 60 year old woman goes to her doctor with dizziness and poor balance. Her doctor is not sure what is wrong but thinks about postural hypotension, Meniere’s disease, and benign positional paroxysmal vertigo. He cannot find anything on examination, and all tests come back negative.
…… He tells the patient that he cannot find a physical cause for her poor balance and suggests physiotherapy. A year later, the symptoms have got worse, and the patient is eventually diagnosed with multiple sclerosis…..
….. She wonders why she couldn’t have been diagnosed earlier. So why couldn’t she have been diagnosed earlier? One possibility is that her doctor was “satisficed” with the differential diagnosis too quickly…..
…… Satisficing is a portmanteau of satisfy and suffice. It means that when you make a decision, you think through alternatives until you decide that you have done an acceptable job. But the problem is that the threshold for acceptability is subjective, and many people are “satisficed” too soon…..
Patients confidentiality and privacy must always be kept . Certain types of information are prohibited by law .
Not always. This patient almost certainly consented for her information to published. The BMJ makes the latter a requirement.
My partner was diagnosed with MS very quickly. Perhaps she was lucky that she stumbled upon a good urologist or perhaps the symptom was more obvious.She was, however, then misdiagnosed with PPMS within a space of one month and 2 appointments, and sent home without meds. By the time an MRI caught an enhancing lesion and she changed neuros, it was too late: that lesion had formed. Apparently it worried her neuros because it was close to her grey matter.Blah blah blah: if my partner had a neuro who wasn't trying to fob her off and who offered her dmts while we watched and waited to try and figure out what type of MS she has, I believe she would not have this extra new lesion. I believe the lesion has affected her balance. She had no balance issues before the lesion and has been left with permanent disability.What do I about it, except foam at the mouth?Ah, listen to stories about other people's heartaches on the same topic and the opinion of your attacking colleague. Here is a summary – http://www.medhelp.org/posts/Multiple-Sclerosis/Lies-My-Neuro-Told-Me-or-Common-MS-Myths/show/1074879I shudder to think what people with MS who were made feel like it's in their head feel (in addition to that ones that went through a host of other illnesses before the MS diagnosis).
The simple truth is that there are far too many incompetent and/or lazy GPs. There are also too many neurologists who want an easy life and, after a diagnosis of PPMS, simply write off the patient. That is my personal experience at least.
How about too few neurologists? Per population the ratio between the UK and rest of Europe is 1:6 at best.
Is that a recruitment problem in the UK or is that all the NHS will allow?
Maybe a clinical trial is needed to determine whether more neuros will improve patient care and outcomes ��After which another clinical trial will be need to confirm the results of the first one. After which you will need 20 years of real life data to wait for before the issue can be decided. There is just not enough data at the moment to do anything about it really. Neuros are dangerous you know – they cause heartburn. Before getting more neuros you really need to fail at a few other less drastic solutions first. But anyway, I reckon increasing neuro numbers won't help patient care although my identical twin reckons it will. So, in conclusion, you are not getting more neuros because I have the referral pad and the education and I just don’t think you need it. I shoulda been a politician. Or a neuro 🙂
You might call it association and not causation, but those countries with more neuros have many more pwMS on DMTs…Recruitment problems might kick in if the 'kick em out' mantra becomes more prevalent. At this stage it's the number of posts (= funding) on offer that limits numbers.
My GP told me I had MS 4 years before it was confirmed by a neurologist
Are we talking about diagnosis being delayed due to there being insufficient numbers of neuros? Surely the bigger problem is that diagnosis is delayed because HCPs (mostly GPs) fail to recognise the symptoms of MS.
Above response was with respect to neurologists 'having an easy life' after diagnosis.However, if there were more of us around, the threshold for GP's to refer would be lower as they wouldn't need to focus on gate keeping.
What if there were more neuros but they were of the type that questions whether we should be aiming for a quicker MS diagnosis?
I don't think delaying diagnosis is a prevalent view anymore; but it's on us to train the next generation.
I tried to see a Neurologist at Barts, but my GP wouldn't give me a referral even if the neurologist was willing to see me…because they (interally) cost too much, for the condition they misdiagnosed me with.Not gate keepers…..but purse string holdersI suspect one of the greatest advances for MS treatment has not been the invention of some drugs, but the MS nurses that their creation has supplied.
If dizziness and balance were the only issues for her at that point though, how would you get an ms diagnosis from that? I get the impression that GP's are required to have very good reason to refer patients to specialists due to pressure on hospitals.
This topic is very near and dear to me. I was diagnosed at 60 after having symptoms for 25 years that were all explained away by other things. I think part of the problem is that multiple sclerosis is so different in everyone that it's difficult to diagnose. However when I started falling about 15 years ago that should have been an indication to the neurologist who saw me that something was wrong. She basically said there was nothing wrong with me and she had no idea was falling. It has been a frustrating process.