Ditching the Dinosaur

D

Here is a youtube Video from Aaron Boster on how to switch your neurologist.

Maybe ProfG will give a hangout on how best to navigate the NHS and how to switch neurologists. Some neuros are great but you may sometimes feel that an alternative opinion will be helpful.

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MouseDoctor

8 comments

  • I’ve seen whichever neurologist was available (NHS). My best neurologist, who diagnosed me with PPMS sadly left. The two I’ve subsequently seen were very disappointing, for different reasons, and I wouldn’t see either of them again by choice. I’m just thankful I’ve no need of a neurologist right now. (Not on any medications at all.)

  • It is not just neuros. Ask two people in the NHS the same questions and quite often you will get different answers.

    I needed an eternal catheter taken out after a UTI, GP nurse was going to send me to a catheter clinic, 3 – 4 week waiting time plus I was too fit and able for a district nurse to visit me. Uro neurology nurse did it in 4 minutes, a really easy simple procedure.

    Problems exist across thew board

  • I didn’t wait for NHS. As soon as my MRI showed Dawson Fingers (Not sure what these are) I made private appoint with Neuro. Thinking if they’re working in private sector they must be good. He put me on tecfidera. But as soon as I had a lesson. He pushed me to have Alemtuzumab. To me he made all the right choices. Within 2 months of MRI I was o. Treatment. 1 year after that on Alemtuzumab.

  • Thanks MD – love the use of other poeples’ clips – ovelapping concerns and so well done.

    Looing back through the (old) blog, there is useful information on this in the article by Prof G on 18th October in the article “Why is prof. G dissatisfied’ (https://multiple-sclerosis-research.org/2018/10/why-is-prof-g-dissatisfied/) and especially in the comments inclding one from Bruce the Philosopher.

    Key bits are copied below (with minor editing for typos’s):

    October 20, 2018 at 11:49 pm

    For “Annoymous on Sunday Oct 20th @ 12:53” – RE: How to diplomatically change your neerologist?

    I did this, well, but perhaps not so diplomatically. I was not geting the kind of support I wanted and expected, and was given annual meetings basically checking I was still alive and still getting worse – to paraphraze my then neuro “your disease is progressive, there is no cure, and we can’t do anything other than watch it progress, and if you want advice about medicines, talk to the MS nurses…”. This left me demoralised and feeling that there was no hope – this was not for me. This bozo had given up on my behalf and I was not going to be a passenger on THAT ride.

    Here’s how I did it:

    1. Talk to your existing consultant and say why you are not happy with the situation. I did, he did nothing, so I left. I have no regrets other than I should have done this earlier.

    2. Talk to other pwMS and ask who they have as a neurologist and enqure about what they are doing with their patients. If its just talk, move on. If you want to move, find out who and where you want to move to.

    3. Talk to your GP and ask for a referral to another neurologist, hopefully specifying someone or a department in a different hospital. They will outline what you can and can’t ask for a referral for – its not straight forwards. Mine was to question the original diagnosis as some of the symptoms I had did not match. Well, they probably did, but its a way in and a way of having a new batch of tests to actually see where you are in terms of disease activity and progression. My GP was open about this process – the new neurologist/hospital are probably already over-stretched, and lets face it, the good neurologusts probably get a lots more referrals than they can posibly deal with. A factor to be aware of is that NHS funding is regional so a referral within your region is more likley to be successful.

    4. Like other philosopher’s, there is NO number 4.

    5. Be persistant. Phone the chosen neurologist’s secretary/pa and politely ask if there is any news on your referral. At least they know that you are keen. OK, so this probably won’t do any good whatsoever, but, it sure as heck makes you feel that you are trying your best and doing something positive and re-take control. Doing something is always better than doing nothing when your conndition is degenerative.

    6. If your referral does not work, try again somewhere else.

    My advice is that if your neurologist is not actively looking for ways to treat your disease activity, it is in your best interests to change this by giving them a prod in the right direction, or moving.

    Bruce (the Philosopher)

    —————————–

    Addendum: I moved to a hospital over 100 miles away now more than 2 years ago in order to get the right specialist advice and support for me – maybe many others can’t do this but for me it worked. I was there last week and the team and support were fantastic – really engaging with me and my condition. I’m just so glad I was accepted there. My only regret remains not getting a referral earlier. I still see people who have my old consultant at my local hospital – they remain frustrated and have no optimism, but won’t rock the boat. Hopefully outlooks will change.

  • I’d really like an alternative opinion and I know I can ask my GP to refer me for one. Finding out about other neurologists is the problem. I just don’t know who to get referred to.

  • I really rate this guy, I wish all neuros were like him.
    I went through 3 before finding the one I trusted who shared my treatment goals. Makes such a difference. My quality of life literally depended on it. It was such a stressful process and I think I was viewed as being difficult – was never my intention, I just wanted the best care.

  • It took me far too long to fire my first neuro. When asked him a few years after my diagnosis about a second opinion, he told me that I could get one if I really wanted to, but that there was only one MS specialist in the area and that guy didn’t take insurance so it would be very expensive (I’m in the US). It turns out that I live in the same area as a major MS center at a teaching hospital; there is no way he wasn’t aware of that clinic. In retrospect, there were so many other red flags, but there is a weird personal connection sometimes with the person who diagnosed you, and cutting those ties can be hard. Firing him was the best thing I ever did for my health.

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