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

Prev Next
  • wendy80842
    wendy80842 Essexgirlinpain

    Posted

    2bic is right, ms is REALLY stress sensitive, getting ourselves chewed up about pretty much anything can really exacerbate any and all symptoms. I got the whole hypochondriac treatment too, it's such a common experience. I didn't finally get to a neuro until I'd been examined thoroughly and a Dr made the magical leap to 'hang on this looks like it's neurological'. While no one wants ms, by the time most of us get to diagnosis, it's generally just a relief to know what the hell is going on.
  • Essexgirlinpain
    Essexgirlinpain

    Posted

    I know it's totally a mad thing to say but after nearly five years of symptoms coming and going I said to my friend the other day it would be a relief to be told I have ms, she said don't wish for it! ; which I'm not but I'm sick of being ignored by gps and told not being able to lift a cup is anxiety or foot drop is anxiety, or blurry double vision is anxiety gggrrr! Lol

    I'm just worried it will all come back on and they'll not investigate anything else after the neurologist is done. I don't know where to go next except like you say perhaps to a&e but even then I bet my gp had written hypochondriac anxious wreck on my notes so I'll still be ignored.

    Hhmm it's really tough

    • wendy80842
      wendy80842 Essexgirlinpain

      Posted

      In the event that seeing this neuro doesn't get you closer to a diagnosis, if you can scrape together enough, it could be worth your while having a private consultation for a second opinion. Then you would be examined and talked to for an hour, in the end, I went this route and that's what finally led to diagnosis. Note, I went back to the NHS for all MRI's and all ongoing medical needs, it's a bit of a 'cheat', but, at the time, I was desperate.
    • amanda34743
      amanda34743 Essexgirlinpain

      Posted

      i shouldnt laugh laugh doll but at the end there about being a hypochondriac, it did make me snigger as that's exactly how I feel, like a red flag is flashing every time a walk in 
  • bic24773
    bic24773 Essexgirlinpain

    Posted

    I know what you mean about relief, I felt same its a relief to be believed. I'm still going through it though because I was referred to new neuro and he said new symptoms Arthritis and my Dr says no its not sad its a continued nightmare as they've lost my neuro notes too. Take someone strong with you. Best of luck ...look me up in fb if you need an ear. Lorraine Scarlet Heeney :-)
  • Essexgirlinpain
    Essexgirlinpain

    Posted

    Neurologist said I've had too many symptoms for it to be ms and although I'm booked for an mri in a couple of weeks he says I have fnd 'functional neurological disorder'

    Basically told here is a website that tells you all about it. And that's it!

    My gp doesn't agree with the neurologist either and is still saying it's anxiety. She's driving me around the band now as I've said a thousand times I have this bloody anxiety from all the weird symptoms I've had but she won't listen and I'm now on dosulepin.

    So that's that I presume, no help from anyone and very little information about fnd either except one small Facebook group and they are all in the same boat as me.

    Will let you know how the mri goes but as I said Neuro is convinced it will be clear

    • bic24773
      bic24773 Essexgirlinpain

      Posted

      U think I already told you my first neuro was very dismissive and made me cry. If you have MRI scan yours may change his mind too. One thing I never asked ...and that's unusual for me...do you use sweetners? Aspartame ir asulfame ? Or eat things with it in. Is, low fat yoghurt etc x
    • wendy80842
      wendy80842 Essexgirlinpain

      Posted

      'Too many symptoms to be MS' (?!) That's a new one. Yeah, I was told I was 'labile' which turns out means weepy, which definitely described what I was back then, primarily because everyone was dismissing me as imagining, faking or misunderstanding nothing at all. Remember what that was like, I felt like screaming. When I was FINALLY diagnosed with MS I felt like tracking all the people who'd dismissed me down and shrieking 'see, you clueless idiots!'. Perhaps I should have. Chin up, keep records of your symptoms, appointments, tests... Everything. Try for a second opinion, or go to A&E. Take care xx
  • amanda34743
    amanda34743 Essexgirlinpain

    Posted

    Well girls got a letter in from neuro denying she diagnosed me with ms and that my lesions are due to getting older I started symptoms 3 yrs ago at 42yrs old! She also stated that I am getting Mir next week just to draw a line under this as I have FUCTIONAL NEUROLOGICAL DISORDER!!! Wtf x
    • wendy80842
      wendy80842 amanda34743

      Posted

      Oh the bitch, will somebody somewhere save us all from these soulless vultures. Seriously, do they not understand what 'caring profession' means?! WTF indeed. Do they score points for denying us our sanity??? I'm sorry that you're going through all this crap. Record it, try to get copies of all the records pertaining to you, if you don't already. I feel for you
    • wendy80842
      wendy80842

      Posted

      I just looked up functional neurological disorder... What a complete cop out!!!

      SECOND OPINION TIME❗❗❗

  • Essexgirlinpain
    Essexgirlinpain

    Posted

    Honestly I give up no one is listening to me and I changed gp because I swear they have hypochondriac on my records.

    Thing is my gp is convinced it's anxiety, but there was a particular day in November last year when my husband and I were in hobby craft, and I looooove hobby craft lol we had been Christmas shopping all day but I felt ok, then half way through walking around hobby craft I went dizzy and my right foot started to drag instead of me being able to lift it properly. This stayed that way for four days.

    I have no back or too problems and I didn't feel anxious at all, so where on earth did that symptom come from?

    I had a similar glare up after my birthday in 2014 I had a huge birthday party and it was a really fun day and night, two days later the off balance feeling started and after ten weeks it went, then a month later it came back again. Now tell me one person who doesn't get anxious because of all this rubbish??

    Not to mention the fact I was told the first lot of dizziness was an ear problem due to having nystygmus too and night time I lost vision in one eye. But when I went back to my gp as requested so I could be revered to an ent specialist like she told me to, I was refused and told it's anxiety here's a psychiatrist appointment and antidepressants.

    I'm so sick of all this now 😣

    If my mri is clear then I'm going to be on antidepressants forever as that's all in ever offered and they don't help.

    I currently am ok apart from the odd wobble with walking and hand tremors which is super annoying as I sell crafts but can't do fine detail stuff at the moment , and I'm now on 100mg of dosulepin and it's not talking one bit.

    They are meant to make me sleepy too and it's currently 6.45 am and I've had an hour's sleep and this is the second day like this, this week źzzzzzzz

    • wendy80842
      wendy80842 Essexgirlinpain

      Posted

      Honestly, if you can manage to pay for it, go for a private appointment with a different neurologist, then you'll get an hour long consultation, where you'll be able to say everything you need to and you'll be tested/assessed properly. Being dismissed as a hypochondriac is SUCH a common problem for so many people who turn out to have MS. now, no one HOPES for a MS diagnosis, but (again?!) many of us are treated so poorly that by the point of diagnosis, we're over the bloody moon to get ANY diagnosis, just to have an idea what it is we're dealing with. God this crap puts me into full on rant mode. I'm sick of hearing what these pitiful excuses for doctors get away with.
    • amanda34743
      amanda34743 Essexgirlinpain

      Posted

      oh god your in same boat as me!! No wonder were anxious right enough eh! My scan is end of month! Am praying for answers but I just think they will hit me with this FND sh*te! My thyroid pain is still going on so am going to ask again for blood tests my temperature sits around 34/35 deg.... I have been dieting since new year but still can't loose! I also don't sleep but when I have overwhelmingly bad fatigue I sleep for a week x
    • amanda34743
      amanda34743 wendy80842

      Posted

      wendy can I ask what you were like leading to diagnosis, how long, what age and if u got an mri xx
    • wendy80842
      wendy80842 amanda34743

      Posted

      What led to me being diagnosed (sorry a bit long winded) was fairly weird, I fell on black ice, hurt my back and went into a huge relapse. I didn't know what the hell was happening. Various doc's didn't believe my pain/symptoms etc. I was desperate by diagnosis. My lovely dad insisted that I see someone privately, bless him, he died a few years later, no one had realised it was a neuro issue so I went back to an orthopaedic consultant, who examined me PROPERLY and said the magic words 'I think this is a neurological problem'. I distinctly remember saying 'what, like MS?' And not being serious, hah!. He sent me for my first MRI (with the NHS) , and informally diagnosed me and sent me to a neurologist, I had more MRI"s done and a lumbar puncture, this led to a formal diagnosis. When it all began, in 2003, I was 38, I was formally diagnosed just before my 40th, (and that was quick, for the UK!!).
    • wendy80842
      wendy80842 amanda34743

      Posted

      Amanda, sorry if I'm repeating myself, my attention span isn't great, but do keep a running record of everything that's happening to you. It's just as important to record when symptoms stop, as when they start , because it shows a patter . I was wondering, where abouts are you, geographically? My neurologist is at a Middlesbrough hospita .
    • michelle46271
      michelle46271 wendy80842

      Posted

      Hi Wendy

      I've been following your posts and I wondered if you still look on this forum?

    • wendy80842
      wendy80842 michelle46271

      Posted

      Hi, Michelle, yes, I still keep popping in here, from time to time, I seem to now be 'one of the old guard' where MS is concerned. I remember it being useful to here from someone who's been diagnosed for some time, while going through it myself, so I'm trying to do the same myself.

      Hope you're OK.

Back to top
Prev 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.