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So here we go... Neurologist appointment?

Firstly, I’d like to thank those who replied to my other thread, it really means a lot and I have read them! I went to the doctor today, he nearly tried to make me say I’m better but my symptoms are getting worse. Although I was an idiot and didn’t say so, I just said my original symptoms are still happening. I’m aware this may make my referral slower so I’m worried about that, how long I will have to wait. He tested my reflexes, said my left leg is acting weird so is referring me to a neurologist, he was testing me as to whether it was my head or not, I told him I know the symptoms my mental health causes and this is no where near to it. After testing my reflexes he decided it was physical so there we go, what a relief! I just wanted to know what happens at the first neurology appointment? Do they send you for an MRI/CT/Lumbar puncture first or do they wait for the first appointment and to hear your symptoms, that’s what I’d like. Also is it helpful to take a list of your symptoms even if they cover the past few years as my symptoms have but to note when they occurred? My mum who’s a nurse advised me with my GP not to overload them as they can only focus on a few symptoms at a time but I’m hoping with a neurologist they’ll be able to handle more? Is it like an assessment or do they guide you with set questions? Just wondering. I’m really nervous now and scared, but relieved I’m finally being heard even though today I had to fight for it today which upset me a bit and threw me but we got there in the end and a referral is on the way. I hope your day is letting you cope as best as possible, take care!

That’s great news! I bet you feel relieved that you weren’t being messed about. Well done. All that happens( well, what happened with me) is you have a chat with the Neuro about what’s been happening( a few notes to remind you of the worst of the symptoms) and then he/she will test your reflexes and responses to little tests they do. It’s nothing strenuous, it’s just a check to see what is going on with your brain function. Then he will decide if you need an MRI or other tests. All you can do for now is try not to worry and look forward to seeing the Neuro and getting your voice heard. Now, it might take a few weeks to see him/her or it might take a few months, so don’t be surprised if you have to wait a while. Best of luck and we are all here if you need us xx

Good good. At least things are in motion now. What were your reflexes like??

When I see my Neurologist I have started to take a list of symptoms including distance to walk unaided etc, my response if I was to be questioned is that my MS does give me some cognitive isssues with my memory and that i didnt want to be in a position where I forgort something that was relevant. When I received a copy of the neurologists letter to my GP a lot oif what I had put in my aide memoire of symptoms was included. I am off to a DLA tribunal tomorrow and I am going to use excatly the same approach with the panel!

When you see the Neurologist you will have a standard set of tests which allows them to assess your level of disability. When I have been they prick your legs with a small needle to test feeling, then do the same with a tuning fork, they check your feeling in the soles of your feet and then test strength in arms and legs by getting you to push and pull against them. They will also get the rubber hammer out to test your reflexes and ask you to walk in a straight line, they also test your balance by walking foot to foot in a straight line. There are other tests with your eyes and in pointing your finger to a point and then back to your nose. Just remember they will be working to a set checklist which will end up providing them with an assessment score for you.

if you havent been diagnosed then these tests will provide a steer to the Neurologist as to whether their is a probability/possibility of you having MS and that may trigger a referral to an MRI scan. For me that is the crucial test and whilst I had my first relapse 22 years ago it wasnt until I got an MRI scan some 12 years ago that I actually got a firm diagnosis, so my advice would be to try to push them for an MRI scan otherwise you will be in a sort of frustrating limbo land of not really knowing one way or another.

Hope this helps and good luck!

JC

Hiya little spara,

Here’s an account written by a doctor about his diagnosis, http://www.mult-sclerosis.org/diagnosingms.html If you get a nice one it is a good experience. A few have no empathy; don’t let them; they are not superior beings but there for you.

G

Thank you all! Beverly- I am relieved now at first even though I was expecting it, it felt like I was whacked around the head. Me and my mum are going to do a chronology in the next couple of weeks, she’s good at stuff like that, being a nurse. I’m hoping the neuro will see me as a whole which would be nice as up to now I’ve been seen by different specialists all looking at different things. Kisywisy- I had positive babinski’s sign and abrupt reflexes on my left side. Hope that helps? Thank you JC that’s incredibly helpful! I appreciate all the info, it’s helped me put things in perspective! I hope the DLA tribunal went in your favour? G- that’s an interesting and informative account, thanks! Thanks for the advice too, I’ve met docs with no empathy but this is something I’m not going to let them shoo shoo! We’ve thought I’ve needed a neurologist for a while, this is my chance, so we’re going to do our best to get me heard :slight_smile:

When I had my appointment with the neurologist, it lasted 3 minutes, improperly tested my reflexes and refused to listen to my experiences of symptoms, so don’t get too excited that this is going to give you some answers, not all neurologists have a good bedside manner, and some people here are on their 3rd doctor trying to get to the bottomof things unfortunately.

I agree with deadchick. My neuro was quite pleasant, however, she whizzed through the tests and , as all seemed normal, referred me straight back to doctor with advice that I could take a neuro -modulatory agent (Gabapentin/Pregabalin) if symptoms continued. It took 15 minutes and I was disappointed in a way not to be referred for an MRI. Now I have had a chance to reflect, I am ok about it. Both doc and neuro said to watch and wait which I am doing. The Pregabalin is just starting to help I think. I would take a list of main symptoms but don’t hand it over. Be clear about your concerns and be open minded about what may happen. You may be referred for an MRI or other tests, but you may not. You can always go back to thr doc/neuro or get a second opinion. Hopefully it will be a good appt for you, but prob best to be realistic then anything else is a bonus! Best of luck PG x

I’ve been through it already with psychiatrists which was more life threatening, I never get my hopes up with consultants, I had appalling treatment from some of them, it took five before I found the one that listened to me and put me on meds as an experiment, and because they worked I was taken seriously, now I’m getting the correct treatment. I don’t care about diagnosis what I want is the correct treatment, if they do a five minute jobby no doubt we will ask for a second opinion. I want help to resolve falling, a way to go to the toilet properly and to stop the water in my leg, basically I want to change from gabapentin to something else. So although I’m hopeful, I won’t get m hopes to far up I’ve had this before and I’ve not been taken seriously, it’s taken this long to have my symptoms heard enough for a referral to a neuro. I’ve gone with odd symptoms since I was sixteen, but it was all put down to mental health. This was the first doctor to think it could be something more. I can but hope I’ll be treated right but I will be realistic, thanks for taking the time to reply both of you, sorry you’ve had a hard time! Take care.

Hi, Great news even if it has taken so long to be taken seriously. Hopefully the neuro will be a nice one - met one total waste of space consultant before which has delayed me in getting MS tests done for nearly 7 years as he was such a vile human being and totally unsympathetic also thinking it was mostly in my head despite having abnormal reflexes, etc - even his registrar who independently examined me as a second opinion totally disagreed with him and wanted to send me for further tests. He just seemed more interested in finding ways to reduce me to tears and overruled her. Fortunately I have discovered that there are many decent neuros out there since then and the latest round of symptoms persuaded me to finally bite the bullet and have another go. I really hope they manage to help you, they will examine you and talk to you about your symptoms - bring a list with dates as it does help you to refer to when talking to them. Stay strong, hopefully you will get a great neuro or at least one who knows what they are doing and they find something to help with your symptoms. x