Forum

new here and waiting for answers

Hi

I have been referred to a Neurologist by my GP as I have been having numbness, altered sensation and a feeling of something crawling on my skin of my hand, foot and face. I had this in my face quite a few years ago and had tests then, but it resolved and I didn`t push it further until now. I have also had a few dizzy/feeling faint episodes and have an ECG booked too.

What can I expect from the Neurologist? and do these symptoms sound like MS? My GP thinks it could be but also said try not to worry.

Thanks

Hi They might point to MS but equally they might not !! There are all sorts of explanations for these type if symptoms. The neuro will take a full history from you so make sure you take a list of things that you want to tell or ask him. He will probably also do a range of sensory, strength and perception tests with you. Your GP is right to say not to worry as stress can make ill health worse but I think that’s easier said than done. Catherine Xx

Hi

The first neurologist appointment is likely to be spent taking a history from you and doing a clinical exam (testing reflex’s and strength etc) Then based on the neuro’s findings sending you for more tests, possibly a MRI and blood tests. Both of which are used in diagnosing a wide range of conditions. Make a brief list of your symptoms in the order they started and take it with you to your appt, it will help the neuro get a good understanding of your history. Also if you can have somebody go with you it’s always helpful, they can be a second pair of ears!

Your symptoms are common in MS but numbness can also be caused by certain vitamin deficiencys (b12), which the blood tests could find. MS can only be dx by a qualified neurologist though, so I wouldn’t worry about your GP’s comment too much. However they were right in saying try not to worry (as impossible as it may be sometimes!) try to take each day as it comes, you will get answers eventually. It can be a long process getting a dx as there are so many other conditions that have to be ruled out first.

Hope that helps, let us know how it goes?

Laura :slight_smile:

Hello, Good luck for your appointment and try not to worry too much (hard though I know). During my first appointment, I was so nervous but when I found myself being asked to stand on one leg and hop round in a circle, I started to relax! They do various tests, so I’m not saying this particular test will happen to you! He/she will ask lots of questions to build an accurate picture in addition to GP details in the referral letter. It helped me to write down the worst symptoms and put them in the format of start, end and if I completely recovered in between. Obviously, if there are no gaps in between symptoms, then you would say that. They will do a physical exam called a clinical exam (I found this really interesting). Checking your eyes, arms, legs, feet, strength, reflexes etc. really nothing to worry about. My Neuro kept very quiet throughout and didn’t hint at what he suspected. I just wanted to mention that because at the time I felt a bit disappointed that I was none the wiser but knew it was probably for the best. Sorry if I’m waffling, I’m very unconfident with posting to newbies (newly diagnosed). Sam x

Hi thankyou for your replies

I have been tested for Vit deficiencies and have been taking a high dose Vit D supplement on prescription for 1 year of a 2 year prescription. I have had an ECG and contacted choose and book about my Neurology referral and been told it won`t be looked at to be triaged until 23rd Sept! I feel this is a long time to wait for it to be even triaged before I am given an appointment so have left a message for my GP to ask if it can be looked at sooner.

I will start making a record of my symptoms , good advice thanks.

Fizz

Hi Just to say welcome to the forum. I’m pretty new here too, and no dx yet (have had 1 MRI, waiting for second). I definitely think patience is important - waiting lists are long for neuros and dx for neuro complaints is complicated and takes ages anyway. Otoh, in my experience def worth keeping ringing the appointments line for your hosp - sometimes they add new clinic dates and some people cancel so you may get bumped forward if you ask nicely - I got my first appt -initially 16 weeks away- moved 6 weeks forward by doing this. All the best, Clare

Hi. The others have been spot on with their advice, Sam you did really well. I was also diagnosed with PPMS recently but it was a process that took 2 years from when it was first suggested. I got referred in the end to a lovely Neuro who promised to get answers for me and he did! Neurological diagnoses are a process of elimination as they’re so similar and complex so as discussed write a good history of symptoms I.e. what happened, when, did it get worse / go away, how long… Everything but don’t overwhelm the poor chap with details or they might lose patience. Give basic complete information, if he wants details he’ll ask, remember he’s seen all this before, dates or years when it all started are also good. It’s really nothing to worry about, just a thorough examination by a new specialist. Keep a list of questions too in case you go brain dead like me, I still keep a notebook for questions to most of my appointments with everyone.

Take care of yourself and try to just enjoy each day, whatever the label, you’re still you.

Min x

Thankyou, Clare and Min for your replies.

I will start making a few notes after the weekend. I dont want to dwell on my symptoms this weekend with all my family around. I didnt get a call back from my GP about the referral via choose and book, hopefully will hear something on Monday. I am so tired at the moment , but this could be from my recent operation too, and it is still very warm here. I just feel wiped out.

That is a good comment to remember Min that whatever the label we are still us, it is something I have had to get used to as I have had other health issues which have caused me disability too. But i am still me! warts and all, No! I haven`t got warts honest!! :slight_smile:

Thankyou for your support

Fizz

Welcome, I’m waiting for my first appt with neuro. Appts do seem to take ages to go through. It will be 3 months from the date my doc referrd me to seeing the neuro. The boards are brilliant for talking through symptoms though, whatever you end up being diagnosed with. I’ve come to the conclusion you just have to be patient and open minded with it all, and try to get on with life in the meantime.

Sharon xx

Hi Sharon

Thanks for your reply. Good luck with your Neuro appointment, I hope you get some answers. I would feel ok if I knew when my appointment was going to be, hopefully I will soon. I am having a good look around this site to get some more information. I am finding it great for support and advice.

Fizz x

I know Fizz, it’s all waiting in the dark. I’ve got a week and half left till my appt and am counting down the days. I hope yours isn’t too long. Definitely try ringing up to see about cancellations

Sharon xx