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Awaiting Neuro App

Hi, I’m new here, I’m really sorry if I haven’t posted in the right thread. I’m just wondering if anyone can give me advice. I’ve read through a few posts but really I just want to know what to expect at my first neuro appointment? It’s a private appointment. I’ll give a little run down on why I’ve been referred… I had a bout of extreme vertigo and exhaustion last summer and was tested for thyroid and vitamins etc. All bloods clear. Dr said poss inner ear infection and just to rest. Resolved mostly with just the occasional bout of fatigue and Dizziness but not as long lasting as in the summer. My recent reason for visiting my Dr was a facial twitch which was pulling up my left lip and cheek. When the twitch isn’t there I have a near constant rippling under the skin on my left side in the cheek and upper lip region. Initially I put it down to tiredness but after a week it still hadn’t gone. Then I started to get an electric like tingle around my upper left eyebrow, pains in my neck and shoulders and tingling/electric type pains down my arms and legs. I actually feel like I’m vibrating. Dr prescribed antibiotics and did more bloods (clear again) and then said it might be bells palsy but then decided she wasn’t sure hence the neurology referral. This has been going on fir 4 weeks now. She mentioned MS and now I’ve had a look lots of things resonate with me. In 2012 I was tested for b12 due to tingling. Also I was put on vesicare for bouts of urinary urgency. In 2013 I had test for pain in my left ribs and difficulty swallowing, nothing found again, this resolved itself. I still get pains in my left ribs from time to time and I also have bouts of urinary frequency but not always. I have also found my short term memory terrible. I am keen to get to the bottom of it all but at the same time worried as I had never even suspected MS. What should I expect from the neuro and should I tell him the historical symptoms too of just focus on the current facial twitch and electrical feelings? Thanks in advance Ria

Hi Ria,

See Diagnosing Multiple Sclerosis

Or https://www.mstrust.org.uk/a-z/diagnosis

These are people who know what they’re talking about.

Tell your Neuro everything; whether you think it is relevant or not; let them decide.

George

Hi George, Thank you so much for the links and for your response, it’s very much appreciated :slight_smile: Ria

Hi Ria

It’s sometimes helpful to have written down some notes of what symptoms you feel might be connected and the approximate dates plus how long they’ve lasted.

You usually expect a neurologists appointment to include a potted history of what’s happened to you and when. Hopefully a neurological exam, when he/she will test reflexes, pinpricks for sensory changes, following his finger with your eyes, lots of other things that you don’t get the point of, but which will help the neurologist decide what further tests to do.

Then, chances are they’ll refer you for an MRI, maybe a Lumbar Puncture and / or other tests. At this point, you could find that you might be able to transfer back to the NHS so you don’t have to pay for all the tests. It depends on the neurologist, whether they have an NHS practice (and of course, what you can afford).

You obviously can ask at the initial appointment what s/he thinks, but you may not get a definitive answer.

Sue

Thank you so much Sue, I’m a little nervous about it all and wasn’t too sure how much to mention to them. I think I’ll sit down this week and write down everything that has had no diagnosis to date and see what they make of it all. Thank you again.

Hi, I saw my neurologist two weeks ago. I was really worried about if he would take me seriously. I need not have worried as he was brilliant. He sat me down and asked me to tell him all what had been happening to me. He did not rush me and wrote everything down. I then had a physical examination as Sue said. I was in with him for over an hour. He said he would arrange for me to have an mri scan, lumbar puncture and vision test. I had my brain mri done last Friday only 10 days later, which is wonderful. As you have been advised write everything down and take it with you. I have a number of symptoms but the most worrying one to me is short term memory loss. Try and not worry too much, I did and it was all for nothing :slight_smile:

Thank you, that’s really helpful. I hope everything goes ok for you :slight_smile: So hard to not worry, I hope my neuro is as nice as yours sounds, I kind of feel like I run the risk of sounding like a hypercondriac if I list everything but as you say, the short term memory thing is worrying…it has become a running joke in our household, I ‘tidy’ everyone’s things away and then have no recollection of where I’ve put it! Also, my husband will tell me all about his plans, then when he comes home late I am baffled as to where he’s been, he’ll then bring up a text from last week where we discussed it and I just can’t recall any of the conversation. I just accepted that was just a me’ism but maybe there’s more to it. I guess I’ll have some answers soon enough.

I’m not sure if anyone is still reading this thread but I have a strange new symptom…for the past 3 days I have had an icy hot feeling across my cheeks, my right ear, down my right arm and on my thighs. It is so odd, almost like someone has rubbed vapour rub or something onto my skin. Has anyone else had this?? I have my neuro appointment on Tuesday so I will definitely mention it to them too.

Hi Ria

I do not have a diagnosis but have had very similar symptoms to you for 7 months now. I had severe vertigo and then had vibration feelings in arms and legs I also have had twitches and icy cold sensations in my legs!! I have seen lots of different doctors been to a and e twice and finally saw a neurologist privately in December. He did basic tests and said he didn’t think it was anything to worry about and to see how I go. He didn’t order a MRI as he didn’t think I needed one at that time so I kind of agreed with him and was relived he didn’t think it was anything. Anyway I still have symptoms so I’m just living with it at the minute. I be not had any new symptoms but do still get a shakiness feeling and the icy sensations. Will be interested to see how you get on. Good luck

sam xx

Hi Sam, I actually had a dream last night that the neuro didn’t bother listening to me and sent me back to my GP. I can’t believe they didn’t order an MRI for you. I am really stressing about my appointment because I’m used to being palmed off by Dr’s and I am really hoping I’m going to get someone who actually listens and cares. I will definitely update this thread once I’ve been seen. I have written a log of my symptoms and other things from before that haven’t been explained as some of the guys on the thread suggested and I’m going to try and run through it with my neuro. Fingers crossed I’ll get some sort of reassurance or explanation. I’ll keep you updated! Ria

Good luck Ria

Thanks :slight_smile: Did you get your results yet?

No, I will get mri result in a week or so but need to have my lp and vision test before I will get a diagnosis. I will let you know when I get it.

Yes please let me know. Hope all goes well with the LP :slight_smile:

So I had my neuro app today. He did listen to me but I’m not sure he took in the full picture about my symptoms. I showed him a video of my facial spasm and he said it definitely wasn’t Bells palsy or a hemifacial spasm. He did say that my symptoms seem to be multi focal and said there is a possibility of MS however he said my neurological exam was fine…(I’m pretty sure I had a positive babinski sign but he never mentioned it??) He has referred me for an MRI of my brain, looks like it will be a 3T machine. He said he’s sure it will be clear though. I’m a little confused to be honest. He did keep my sheet of symptoms though, maybe he’ll have a read later!

MRI was reported clear. I do have a copy and wasn’t exactly sure it was clear myself but I am totally untrained in that area! Anyways, the consultant is positive it can’t be ms according to my brain scan and my physical assessment. Obviously I am very relieved to get the all clear but it is bitter sweet as I still don’t know what has been causing my symptoms. Thank you all for your help and I wish you all the best in your ms journeys.

Hi Ria

I do hope that’s a relief to you. It’s very difficult for us to read an MRI scan, but the neurologists do know what they’re looking at and what they’re looking for.

However, it doesn’t necessarily answer all the questions you have.

If you still have the symptoms, you should go back to your GP and ask for help in what / where to do/go now.

And I f you still need people on here to support you, you can continue to post as a number of other people do. Just having had an MRI that appears to be clear doesn’t mean that you have resolved all your problems.

Sue

Thank you Sue, it’s so lovely to have such a supportive group to talk with. Yes, I am definitely relieved and I’m sure I’ll get to the bottom of my symptoms soon. The consultant has ordered some bloods to test for autoimmune and coeliac. Until then I will eat well, exercise and try to stay positive. Ria x