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First neuro appointment on Wednesday ...

Hi everyone

I have my first neuro appointment on Wednesday. I’ve opted to go private to see the same chap that I’d have to wait sixteen weeks to see on the NHS.

I wondered if anyone could let me know what to expect from this appointment please?

As I said, this is a private appointment. I won’t be able afford to see it through and have a lumbar puncture etc. privately. How does that work with being referred back into the NHS? I’m guessing the waiting list will be long for that? If the neuro would like me to have an MRI I can get a scan through a health cash plan that I pay into. Do you think they’ll be happy with that? It would certainly be my preference as I can access a wide bore scanner than way … I’ve had two failed MRIs (on something else) in the past and I know that I’ll panic and won’t be able to go through with a normal one.

Finally, any tips for the appointment? I’ve prepared a list of the symptoms that I’ve had over the last couple of years and I’ll take a printed copy of that so I can leave it with the neuro if he’d like it. Anything else?

Getting anxious now!

Thanks :slight_smile:

I know that other people on here have started by seeing their neurologist privately and have then been transferred to his/her NHS list so I am sure that some of them will be able to give you some advice on the practicalities of that.

With regards to the actual appointment I do have a couple of practical suggestions about how to get the most out of it:

  1. Making a list of previous possible symptoms is a very good thing to do. Your neurologist will take a medical history from you and it is very important that they know about anything that could be important. However, don’t waffle about all of the tiny details and little twinges you had with each one – you will only see the neurologist’s eyes glaze over if you do that! Treat it like that old cop show and “Just give me the facts M’am”!!!

  2. The neurologist will do a physical examination to check your reflexes etc. I’ve had a couple of different neurologists at different hospitals in the last few years and the one thing that I can say is that they are all very different in the tests that they do.

What tests the neurologist will do will depend upon their normal procedure and what symptoms you describe. You will probably be asked to walk a short distance across the room so that your gait can be noted. Your eyes will almost certainly be looked at to see how they move as you follow a moving finger and you may also have a colourblindness test as well. Be prepared to take off your shoes and socks as the neurologist runs a fine filament over the sole of your foot to see if you demonstrate a particular automatic reflex that is common to MS and other neurological conditions. You might also be referred for some blood tests to rule out things like B12 deficincies or lupus etc

  1. Don’t expect a quick answer from your appointment. I know that you will know this, but it always pays to repeat it!!

  2. Don’t tell the neurologist what you think/know is wrong with you because you have been researching it on Google - they hate that!!!

  3. Finally - and most importantly I think - do not go alone if you can help it. There is likely to be a lot of information flying around and it can be quite a stressful time if you have been waiting to get answers about what is wrong with you for a long time so it really helps to have someone you trust with you to help take it all in and fill in any gaps in what you are trying to get across is absolutely invaluable.

Good luck tomorrow. Hope it goes well.

Hi Boblatina

Thanks very much for your message :slight_smile:

I’ve just printed out my little list of weird symptoms and screen shots of the blood work results from a week or so ago, in case they’re useful. Good tip re keeping to the point - I don’t want to sound like a whiner either!

All your points have been very helpful, especially the last one. I was going to go alone but have thought about it since reading your reply earlier and think I will drag the husband along.

I’m quite nervous about tomorrow, but it will be good to get the ball rolling on finding out what’s been going on.

Thanks again x

Hi Wobblynic ,

If it helps here is an example of an MS examination. Neurology - Topic 15 - MS patient - YouTube

I have always seen NHS doctors, because I knew the disease can not be cured, and treatments on offer

are symptom relief, which can be managed by my GP, MS Nurse and Community Rehab Team.

My advice is keep yourself comfortable - know your limits - reduce stress and demands upon yourself -

if you get an infection get treatment ASAP - and avoid hot baths.

Generally Neuros are hopeless at emotional support - so develop a good working relationship with

your GP and MS Nurse etc.,.

You will need this when applying for DWP PIP letters of evidence so keep them

up to date with your current symptoms - as they progress - and the help you get from relatives and carers.

Today the NHS uses SYSTEMONE to log your treatments etc.,. so important care plans are held on it

and checked by everyone who manages your condition.

Good luck with your tests - save your money next time and buy yourself a nice treat.

All the best,

Fay

Hi Fay

Thanks for your message and all the advice. I don’t even know if I do have MS but I’ll keep all this in mind if things do go that way.

I opted to go privately for the initial appointment as the thought of a sixteen week wait before I could even begin to find out what was going on was just too much. I’m more than happy to be referred back to the NHS from this point on. Which is a good job because I can’t pay that price too often haha!!

Thanks

I saw the neuro today. He was a very nice man and I needn’t have been as nervous as I was. He said my history points at possible MS, but the neurological exam didn’t show any signs. Has anyone else had that?

He has referred me for a brain, optic nerve and spine MRI.

At least things are happening!

x

hi nic

that was a good outcome of your appointment.

from this point things may go more slowly.

this is because your neuro has criteria to fulfill in order to diagnose ms.

so well done for clearing the first hurdle

carole x

Hi ya, I had exactly the same from my private neuro this Tuesday. He said sounds like possible MS / multifocal problem but neurological assessment was fine. I’m sure I had a positive babinski sign though but he said nothing about it. I have been referred for a brain MRI only which I am booked in for on Tuesday. I’m wondering if neuro assessments are likely to be ‘fine’ if someone is not currently having a relapse or flair up?? Ria x

I had never heard of the babinski test, even though my neurologist did do that test when I saw him. You are never to old to learn :slight_smile:

Hi Ria

Sounds like we’re at pretty much the same stage :slight_smile:

I’ve been referred for a brain, spine and orbits scan. I’ve got optic neuritis at the moment so that may explain that.

I wondered the same about the neuro exam … could it be that these things don’t show unless a certain part of the nervous system has been affected? Or, fingers crossed, it could mean that we are actually fine … here’s hoping.

I’ve heard that the neuro’s MRI referral letter has gone over now so I’ll call after work and get a scan booked in x

Thanks Carole :slight_smile:

I’ve got to make a call to get an MRI booked in, I’ll do that after work. Then it’s out of my hands as to how fast or slowly things go I guess.

x

It was a new one on me too … I don’t think I even had a response to the test though!

Good luck with your scan, I’ll keep you posted with mine if you like :slight_smile: I haven’t had optic neuritis fortunately as it sounds unpleasant…hope you’re ok. My left eye pupil stayed dilated for a few hours and went bloodshot but all fine now. Dr said no sign of neuritis though. I was a little confused about only having a brain MRI as I have other symptoms that would require the neck and spine. He also hasn’t asked for a contrast on my MRI…I really don’t know if he’s ordered enough tests? X

I just thought I had really ticklish feet, my husband looked it up lol