Forum

1st neuro appointment

evening everyone…

have posted on here before, and thank you so much for the comfort and support you show.

my symptoms have got progressively worse so went back to see gp.

i know have my first appointment with neurologist 2nd jan 2014, my gp has been so supportive.

i was just wondering what goes on at the 1st appointment.?

all the best everyone. x

At mine he asked what the symptoms were then a bit about each one, my general health/illnesses in the past, medication, family history. Then he tested my reflexes, muscle tone/strength, coordination, pin prick test for sensation and looked at my eyes. Ordered bloods that I had done straight away and an mri 5weeks later Axx

thank you arwen, gives me a little incite on what to expect.

sally. x

Hi Channelgirl, I have my first neuro appointment next Friday, so I’ll post a thread to say how it went, as it may be helpful for those still waiting and wondering…:slight_smile:

ev…

thank you catk…

very confused and nervous at mo… how about you.?

all the best for friday.

kind regards

channelgirl. x

Hi there Channelgirl, looks like we’re in the same boat! My appointment is just five days away now…its been a long wait. All the best for January! CatK - good luck! I’ll be posting afterwards, too. This forum is a great place to help cope with the waiting, isn’t it? I’m not expecting a definite diagnosis on a first visit but I will ask for some idea. I’ve been keeping a symptom diary for 15 months. Time for some answers. Arwen - do you have the date for your next neuro appointment?

Got my first appointment with neurologist on Saturday morning, had a repeat brain MRI and full spine scan done last night, so hopefully some answers of some sort on Saturday, this week is dragging! I’ll keep you all posted :slight_smile: x

It’s such a massive milestone to actually get to see your neurologist for a first appointment, however, please, all of you remember, that this will be literally the first step to more waiting, for tests, MRI scans etc. You pin so much on the first visit, but all they can really do is give you a maybe, it all depends on the test results, which as you wil probably ready here, can be frustratingly negative despite all the symptoms you are literally struggling with on a daily basis. I would hate for any of you to come away disappointed thinking that you may get answers straight away. They might tell you that it does sound like MS. I am sorry if I sound like a real party pooper here, but from my own experience, I want you lot to be prepared. The road to diagnosis can be a long one of waiting and frustration, something I wasn’t prepared for. Good luck all of you in your search for answers

Really appreciate your post, I know myself that I’m pinning too much hope of a diagnosis on this first visit, thanks for the reality check :slight_smile:

Thankyou Anon. That does bear repeating, you’re quite right. Personally, anything would be a step forward at the moment and this forum is such a help. Nobody likes to be left in the dark. Good job there are lots of lovely candles here :heart:

And quite right too, I agree that getting yourself heard by a neurologist is a massive step forward and feels like you might be getting somewhere away from limbo. Luckily, forums like, this are priceless. You can get so much off your chest and advice from those who are the real specialists, because they are the ones that live with this day in day out. Good luck for your appointment! X

Thanks guys for the advice and encouragement. My appointment is Friday 29th. I’ve also written down a list of my symptoms (as advised by many of you on here), so that I don’t forget anything. I’m a little nervous but thankful I’ve had such a quick referral. I started having problems about June, and went the docs a few times. A new doc I saw in September ordered more specialist blood tests. He said if they were normal that he’d refer me to a neurologist. They were and hence my appointment next week. Now that I’ve written down this list of symptoms, I realise that some of them go back about two years. I just didn’t pay much attention to them or put them down to the perimenopause (I’m 46) and getting older. I’ll be thinking of you other guys also in my position. x

I would second the other anon’s post about keeping in mind that you will not get any firm answers in first appointment, it is just first step, and the most likely outcome is that you will be referred for further tests. In all likelihood an MRI will be ordered; it is pretty much standard practice once someone has got to this stage. But the tests can take months to organise, and then there is more waiting for results and for follow-up appointments… it is a long-haul type situation.

Also, (and again, I don’t want to be a party-pooper) - it is really important to go in to the appointment as open-minded as possible. The fact that we are on this forum in the first place means we strongly suspect we might have MS. But for a lot of people, it turns out that MS is not the cause of their symptoms, and sometimes this can be very hard to accept - because if you feel completely convinced in yourself you do have MS, it can (oddly) be very difficult to come to terms when a specialist says this is not the case. Sometimes being told ‘not MS’ can make people feel as though their struggles / difficulties are not being taken seriously, and that can hurt, and can cause a lot of frustration and upset. But a ‘not MS’ diagnosis is not the end of the road… you just have to keep pushing until you find out what IS going on. I know this sounds like I’m stating the obvious, & I honestly don’t mean to - it’s just that we all need to prepare ourselves for the possibility that MS might not be the dignosis we end up getting.

And my last advice - whilst I have just said to try to be as open-minded as possible in hearing what the neuro has to say - at the same time, stand your ground if you need to. Most specialists are extremely professional, but some are maybe not so helpful. So if you feel like you are not being taken seriously, or if you are not being respected or afforded good care - then stand up for yourself and make yourself heard. If you do have MS - or any other condition - you need to know for sure, so that you can can get the right support and treatment. So this first appointment, whilst daunting, is a very necessary and important step, and you are definitely doing the right thing by seeking specialist support.

It is a daunting process, but remember the vast majority of neuros are extremely good at what they do, and that you will get there (wherever ‘there’ is!) in the end.

some very good advice, will start to do a diary as from tonight…

best wishes everyone.

channelgirl. xx