How Deep is Your Knowledge. Is this the MSer view of Neurologists

Had to laugh a recent comment posted

How deep is a Neuros knowledge….you say…as deep as a Carpark puddle? 🙂

I suspect that is unfair on Neuro’s reading this blog, but what about those non-specialists? 

I suspect that if you get good treatment and advice you are don’t think like this.

Please keep comments constructive:-)

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  • My neuro isn't an MS specialist – her things are epilepsy and migraines. I still have no reason at all to complain about the treatment I've had from her. She's referred me on at intervals to see if I can get DMDs (I can't) and suggested trials. She's very accessible and open to questions and comments. Extremely happy with her overall.

  • I really hope neuros read this blog, I think it would be benefitial to them, their departments and colleagues and us MSers.

  • I care more about my neurologist looking after my whole being, he doesn't need to be an MS specialist. I've had enough doctors that only care about their own speciality and not taking the time to treat me as a person.

  • I have a MSologist who's great but I know two other MSers who have different neurologists, neither of whom specialise in MS. One has referred his patient into a specialist team and onto Tysabri. The other belongs to the "wait and see" brigade and I worry (to use Prof G's mantra) that Time is Brain

  • My neurologist is the best doctor I have ever gp had, for anything. I was once sat in his waiting room with three other patients. He was running an hour late. Not one of us complained as we all said that we knew that when we got in the room we would all get all the time we need and his full attention and follow up. I read lots of people complaining about neurologists that don't support them, or push one type of treatment, or just aren't personable, and I wish they could all have the same experience as me. Of course, he's retiring next year but I think there's still time to clone him!

    • He probably trained at the same medical school as my neurologist. I saw him 2 house late and the transport team rang me to see if I was still at the hospital. Always take a book, because I would sit there until midnight to see him. He's not an MS specialist.

  • Mine specializes in brain tumors, of which I read there are 120 types. Between that, teaching, publishing, and I presume a family, I wonder how much time she spends on MS. There is definitely a "most of my patients die, you should be glad you're not" vibe. Only, I am dying, first my cognitive function, then my left foot, then my ability to swallow. . .just piece by piece. I nudged her to let me go on Tysabri. I am considering going to an MS specialist but the wait time where I live can be up to a year. I like what one person said on an HSCT forum, "it's not a neurological problem, it's a hematological problem." Think what you will of the procedure but that is quite an accurate description of the pathology of MS. And what do all of these drugs target-B cells, T cell alpha 4 integrins. Maybe twenty years from now we will only see hematologists, MRI techs, and RTs.

  • I see a few different Neuros at times, but the main one is a Professor and his specialty is MS, he is always extremely helpful, I've also done two drug trials with him being the one in charge, the "Main Man" so to speak, nice guy!

  • Maybe the immunology dept. in the hospital needs to come out of the cupboard. What do they do? Do they sit in labs all day, or do they have patients? There are so many diseases that are related to the immune system going wrong, MS, lupus, RA etc and yet they are all under different depts.

  • I'm sure my neurologist is entirely competent, and he is a very caring clinician, but the time available to discuss things and ask questions at each appointment is way too short at just 15 minutes, especially when considering medications and the benefits/side effects/impacts of each one in relation to your own personal version of MS. It's not his fault – just the health system in my country is bursting at the seams, and constant cut-backs by Govt means things just get worse. There is a never ending fixation on elective surgery waiting lists, but the attitude to people with non-surgical needs seems to be more than a little lacking. However, it must be said that the vast majority of staff at the coal face of health care delivery here are absolutely wonderful, and do their best despite the straight-jackets imposed on them.

  • "The never ending fixation on elective surgery waiting lists" includes being told you definitely have lung cancer and waiting weeks until you see a doctor. Don't knock it, you never know when you will need an operation..

  • To Anonymous at 7:21pm
    I genuinely sympathise with your situation and hope that your own personal health problems are successfully treated, but maybe I should put my “fixation” comment in context with a timeline. I will number the months (not weeks) involved, with Month 1 being when my GP first sent a referral to the neurology department at our local public hospital.
    Month 1 – GP sends referral to the Neurology Department. In this referral it is made clear that there are significant neurological problems, backed up by an assessment from a neurologist I had travelled 400km to see privately.
    Month 6 – get to see neurologist, but only as a result of making direct contact with him. MRI is ordered plus referral done for another important test which I am told is part of the standard diagnostic work-up for MS. The GP’s referral sent in Month 1 is found in an in-tray, unacknowledged and unprocessed, along with about 20 or 30 other referrals which had not been dealt with due to lack of resources.
    Month 7 – MRI is done, and radiologist’s report details numerous lesions consistent with MS in brain and spinal cord
    Month 7 – written advice received that I have been put into the highest priority category for the additional test, and can expect an appointment for the test in around 6 to 12 months’ time!
    Month 11 – see neurologist again and formally given the diagnosis of MS. Despite the radiologist’s report detailing significant abnormalities the “system” did not appear to have any way to cover the “gap”, and ensure that some “action” was taken. A few weeks earlier I had had to stop work altogether. Neurologist says the additional test is no longer required and the referral for it will be cancelled.
    Month 12 –start on DMT
    Month 18 – able to return to work part-time
    Month 26 – advised by phone that the additional test can be scheduled to be done in a few weeks’ time. Seems that the referral cancellation message never got through, and despite being listed as a patient in the highest priority category it has only taken 18 months after the request was lodged before the test can be done.

    Anonymous 7:21 – I am not knocking “it”, and do have sympathy for those needing procedures such as hip replacements etc and all of the pain and difficulties that they suffer. I know that my MS does not have the capacity to be life ending in the way that cancer can. Your cancer will be dealt with in a relatively short time frame through either/both surgery/chemotherapy and I hope the outcome is positive for you. However, I have learnt from this blog that “time is brain” and my brain is what earns me a living, although that is unlikely to be full-time again thanks to the other physical impacts of MS. Accordingly, my contribution to the taxation coffers that fund public health services is reduced, but due to my MS I will need more services over time.

    The “fixation” I have referred to is because the elective surgery waiting lists are what hits the headlines, they are what our Government bean counters throw a small pot of extra money at every so often when the headlines get a bit bothersome. I am not in the UK, but another “First World” country, in a location where we have a public 300 bed teaching hospital serving a catchment area of around 70,000 people. Unfortunately, the neurology services available here consist of one neurologist consulting a total of two days a week in the Govt system, plus a couple of fly-in private practitioners about once a month who still have a waiting list of several months for an initial appointment (which costs dearly). Would my situation be better if I had been able to be diagnosed earlier and receive treatment earlier – who knows? But the fact remains that my physical difficulties will be with me for the rest of my life, and most likely become even worse – hence my grumble about what gets the headlines.

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