First neuro appointment

New diagnosis and before diagnosis
1

I have my first appointment with a neuro on Friday. I’m so nervous, partly because there are lots of symptoms and I’m worried I’m going to sound ridiculous and not get taken seriously, I’ve intense fatigue, some bladder and bowel issues that are difficult to talk about, altered sensations in one leg, stabbing pains in forearm and both hands and one toe! A few other things. Most are not debilitating. My appointment is private as the nhs waiting list was so long but now I’m worried I won’t be able to afford any tests if they’re recommended. I’m starting to wonder why I’m even going. Did anyone else feel like this? Does anyone have any advice about a first neuro appointment? Sorry its so long, thank you so much if you read it x

2

Hi, I would not worry. This person is being paid to assess you and should be pleasant and take you seriously. I would expect them to ask when you first noticed symptoms as well as take a medical history(if your GP has not provided that in the letter). I don’t imagine you are going to describe anything they have not heard before really. Not sure what you mean by altered sensation? Oh I know what you mean about wondering why you are even going lol! I am going tomorrow to hear what a Neurologist has to say about my scan which another Consultant has told me is positive for MS (there are several lesions on it etc). And I have seen one or two Neurologists over a few years. Make a list of the main symptoms. Basically you will have an examination - they will be looking to see if any of your described symptoms tie in with clinical findings etc You will be fine. Please let us know how it goes.

3

Hi, as Thistlelass said, don’t worry. Here’s some pointers:

  1. Write all your symptoms down, including dates when they began, whether they changed, got completely or partially better.

  2. Don’t be embarrassed about anything, bowels, bladder and sexual function/sensation. It’s all just part of normal bodily functions and we all have to manage them. The first time you talk about your bowels will be the worst time. Honestly. Nowadays I talk about everything to anyone.

  3. If you can, take someone with you to help remember what’s said. It’s not uncommon to leave the doctors room and have completely forgotten what’s been said.

  4. If you don’t understand something that’s said, ask for an explanation. Doctors have a habit of just talking as if you know exactly what they’re on about. It’s taken over 20 years for me to understand more or less everything. But there are still times when I have to ask for a translation into English.

  5. Don’t expect to get answers tomorrow. You won’t get them. The doctor should do a neurological examination which might give them an idea of what could be wrong, but chances are all they’ll be able to tell you is whether they think it’s neurological or not. Tests will be required for more detailed answers.

  6. Assuming the neurologist recommends tests, you’ll probably have to be referred back to the NHS for these, so there will be a further waiting time. It’s possible that you’ll end up seeing the same neurologist on the NHS. I can’t tell you whether you’ll wait a shorter time because a private neurologist has said you’ll need X,Y or Z tests. The trouble is that it’s the tests that cost the money.

  7. Assuming the neurologist does think expensive tests are necessary, ask him/her to whom it might be best to be referred to, ie. is there an MS specialist within your Trust, or whether there might be a more appropriate neurologist for you to see. That way you could ask your GP to refer you to a specific neurologist.

Good luck for Friday, again as Thistlelass said, come back and let us know how it went.

Sue

4

Hi, I also went private back in the late 90s, as there was a 10 month waiting list to see a neuro.

After that initial appointment, I transferred to \NHS no problem and saw the same neuro!

Boudsx

5

I had my appointment today, the neurologist was very nice. He gave me a thorough examination involving reflexes, balance and feeling, he said it was all normal. He thinks its unlikely that I have MS and thinks its stress related but has referred me for an MRI on the NHS and transferred me to his NHS clinic to review the results. Feeling very relieved.

6

Thats the ticket Cookie..let the MRI do its talking and take it from there.

Boudsx

7

Well much to my surprise my MRI is tomorrow! I’ve been offered a cancellation and my appointment is tomorrow!! I thought it would be months and months under the circumstances! I’m feeling pretty confident because my symptoms have really abated, just a slight toe tingle, some shooting pains in my arm and some minor word finding problems which is nothing compared to the 6 weeks after Christmas! Hope everyone is keeping safe and well in these troubling times xx

8

Wow that is quick…fingers crossed for you

Boudsx