1. Community
  2. Brain and nerves
  3. Multiple Sclerosis

1st Neuro appt what to expect

Posted , 8 users are following.

Essexgirlinpain
Essexgirlinpain

I have my first neurologists appointment on Monday just wondering what to expect really? I'm in the UK too so presume it may be different from other countries.

Many thanks in advance if you can help ☺

2 likes, 44 replies

44 Replies

Next
  • bic24773
    bic24773 Essexgirlinpain

    Posted

    Hi not sure I can help but I'm in UK too and I also went to mums neuro with her. If you've had a scan and tests the neuro will discuss results if not he/she will ask about symptoms and suggest tests. I got my diagnosis after MRI head scan but I'd also had evoked potentials and back MRI s. Write everything down, all your concerns. funny sensations, pain etc. Because it can be a bit intimidating. My neuro was horrible, mums was lovely. Just remember its your life and you need answers. Good luck.
    • Essexgirlinpain
      Essexgirlinpain bic24773

      Posted

      I've had no scans or anything yet it's my very first appointment after gp referral.

      Do they book Mel quite soon after seeing the Neuro for the first time or do you get scanned at the same appointment as neurologist appointment?

      Thank you for your reply ☺

    • bic24773
      bic24773 Essexgirlinpain

      Posted

      He/she may book you a scan depending on your symptoms they also sometimes do a lumbar puncture, a need in the sline to draw off spinal fluid, if you have an option let that be your last option. Lesions may show on your spine and brain if you have MRI my brain was inflamed apparently. It's not a quick diagnosis I'm afraid and they don't like giving it. The other thing you may be tested for is fybromyalgia depending on your symptoms and why you were referred. Take someone with you to ask questions because its not easy at first appt and any support is good. Please don't be frightened of MS its not a death sentence but a life adjustment. I hope others answer you to give you a good idea. Wishing you well. Kindest Lorraine PS fibromyalgia test is looking for 18 points of tenderness/inflammation but you'll know by what your Dr said when he referred you whether they suspect ms or that
    • bic24773
      bic24773 Essexgirlinpain

      Posted

      Oops I assumed you'd know what an MRI scan is like ....its painless unless you have a back problem then its just uncomfortable. Its just very noisy and a little confined.
  • wendy80842
    wendy80842 Essexgirlinpain

    Posted

    Hi, you almost certainly won't be scanned at a first app. A full history of your symptoms/experiences should be taken and a simple set of tests of your reflexes, balance, limb, hand and foot strength and a simple sight test. Nothing scary. I recommend taking a list of questions or concerns with you, as it's very easy to forget things, don't worry if you do forget anything, they're used to it and it's always strange going through any kind of diagnosis. If someone CAN go with you it is helpful, but not essential. MRI's are inevitable for a MS diagnosis, while lumbar puncture s aren't particularly pleasant, they are an important diagnostic tool and give any neurologist a clearer idea of what we're dealing with.

    Good luck for Monday. xx

    • Essexgirlinpain
      Essexgirlinpain wendy80842

      Posted

      All of my symptoms stopped about five weeks ago , this was two weeks before my gp out me on tricyclic antidepressants, so my balance is better along with my neck pain and all tingling and hand pain stopped too. The foot drop only lasted four days, so does it make a difference that I'm symptom free at the moment?

      I'm being sent to the neurologist by a go from my old surgery as a gp there suspected ms but I changed to surgery due to no continuity of care and now the current to days all my symptoms are anxiety. I'm so confused at the moment

  • Essexgirlinpain
    Essexgirlinpain

    Posted

    Also is it a neurologist that will test for fibro as I thought that was another federal to a rheumatologist, my current gp isn't going to refer me anywhere else as she's adamant it's down to anxiety. Although I don't understand how anxiety would affect me getting foot drop twice or no strength to hold a mug of tea 😐

    I think I may have a battle on my hands to get listened to by any gp!

    • wendy80842
      wendy80842 Essexgirlinpain

      Posted

      Unfortunately, not being believed by gp's is a problem almost everyone with ms has had to contend with at some point. Keep an ongoing record of all new symptoms, both start AND end dates. It's the 'nature of the beast' with ms, which, hopefully you don't have, that there are times in the earlier stages, when we are symptom free.

      If you hit a diagnostic wall, getting nowhere, If you then suddenly have a major new symptom, you could go to A&E, this might circumvent your gp and get further testing done (not to be done lightly, mind you).

      I'd recommend finding some kind of relaxation exercises to help you feel better while your dealing with so much.

    • amanda34743
      amanda34743 Essexgirlinpain

      Posted

      Keep battling on doll, I have for nearly 4years, I have been driven crazy, but now I keep my strength and go to doctors with every new symptom, do as Wendy suggested and keep a diary, write everything down, and tell them every detail! 

      Good luck 

      ps. I was diagnosed as fibromyalgia with a cheeky gp who told me to go home as they could do nothing for me, then a year ago diagnosed with M.E... I knew it wasn't either so I have kept at them... As I have had progressed with worse relapses and people usually get better with M.E.. 

    • amanda34743
      amanda34743 wendy80842

      Posted

      Wendy during my last relapse I so wish I went to A&E... I didn't know where or what I was at, couldn't speak properly. Couldn't find words to say and when I did talk the wrong words came out! Couldn't walk unless I looked drunk, numbness in my thighs and face.. Oh but my doctor said its my weight that's causing problems!! Haha I didn't realise fat folk went colour blind in one eye! Honestly why don't they want to diagnose MS.. Is the drugs too expensive or something x
    • jade43146
      jade43146 amanda34743

      Posted

      People don't just get better with m.e. some people have this horrendous illness milder as opposed to the severe end of m.e sufferers who can't even feed themselves, get out if bed, need 24hr care, can't have any sunlight and have no life. People with the milder form of m.e can still work but need to rest and pace as often as they can due to relapsing as their illness can get worse. People don't just recover from m.e so that statement is very wrong of you to say. There is so much controversy surrounding this awful illness and m.e is just as horrendous and deliberating as ms/parkinson ect.
  • wendy80842
    wendy80842 Essexgirlinpain

    Posted

    PS. Neurologists are used to seeing people who, at the point of appointment, are symptom free. All NHS Dr's know how long our country's waiting lists are, and how this impacts whether or not we're experiencing symptoms.
  • bic24773
    bic24773 Essexgirlinpain

    Posted

    Hi I didn't want to worry you but now the subjects brought up both me and mum were treat like hypochondriacs, the neuro was horrid on 1st appt but when I went for test results was pleasant, I told him I had cried all the drive home he was up and down like this all the time. Symptoms do go away especially for remitting ms unless you have a prolapsed disc, dropped foot us NOT anxiety but anxiety can make it ms worse.
    • wendy80842
      wendy80842 bic24773

      Posted

      Regarding hypochondria, back before my MS diagnosis, a 'helpful' physiotherapist was, oh so kind enough, to tell me she thought I was 'holding on to pain', like it was 'an old friend'...?! She actually said those words, hah! I never did get the opportunity to point out, post MS diagnosis, just what an idiotic thing she'd said to me. The honking great arrangement of lesions round my spinal cord are what's responsible... Not to rant or anything, ahem!
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.