Generally do MS patients trust their neuro? & why are neurologists sometimes reluctant to diagnose?
I would say both yes and no to the first question. I went through several complete *sses before I found one who was not only decent but whom I’d marry in a heartbeat if his wife wouldn’t mind.
I blame the difficulty in diagnosis on the McDonald Criteria (which I consider to be faulty) and the fact that all of the DMT’s are not only incredibly expensive but have the potential of dangerous side effects.
Years ago, too many people were being diagnosed with MS who actually had other illnesses, and they need to make sure they’re not giving potent drugs to people who don’t really need them. That said, I believe the McDonald procedure needs to be revamped because I don’t feel that it reflects accurate diagnostics.
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HI, yeh I’ve seen 17 different neuros in 22 years…some I wouldnt give you tuppence for and only I would be happy to see again.
People are very lucky to get a neuro they like and trust.
So many other neurological conditions mimic MS and have to be ruler in/out before a diagnosis can be fully given.
Took me 22 years to get mine!
Boudsx
As there are few effective treatments for many neurological conditions and as many neurological diseases are serious and progressive, not surprising if doctors prefer to enter disciplines where they have more opportunities to cure people. Being frequent bearers of bad news and then having nothing much to offer is mentally difficult. It maybe suits better those who lack empathy and where people are just numbers and a sequence of tick boxes … I’ve come across quite a few like that. Also, much more rarely, some really kind, caring, open neurologists.
In the past before MRIs and other tests it was not uncommon for a neurologist to strongly suspect a diagnosis but not tell the patient because they had nothing to offer. They thought that a patient not knowing and left in limbo was better than telling them and then saying sorry bye bye, we’ve got nothing for you. That broke a lot of trust.
It also doesn’t help when the service is seriously overstretched and appointments and tests delayed and kicked down the road for months and years. NHS neurology has been understaffed for years - long before Covid. NICE also imposes restrictions on tests and what neurologists can do or prescribe. If patients raise questions about diet or alternative treatments etc then some neurologists may then give their opinion on them and support their patients, but they can’t suggest things if they are not NICE approved treatments. Pills and surgery are the pillars of modern medicine, preventative and holistic medicine comes near the bottom, especially where there is a lack of resources.
The condition that the neurologists dread the most is FND. FND accounts for approx 30% of patient visits, or so they think, so that is a lot of heart-sinking to endure.
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Thanks for the replies . My neurologist said to me at our last appt he’s “not worried about me at all” , even though I’ve lesions without swelling in my spine. I’m on monthly b12 injections now to see if it works then in 6 months I’ll repeat MRI’s - hopefully the optimism of the neurologist I can trust!