Feeling really upset the Neuro said 'nothing of concern'

New diagnosis and before diagnosis
1

Just been to see the doctor who read the letter from the neuro (first appointment) and told me he said there was nothing of concern and he was just sending me for an MRI for my peace of mind, he didn’t expect to find anything.

I know I may sound crazy being upset over the prospect of not finding anything wrong, but I am in a lot of pain (have meds now) and have numbness and a tremor and I can’t believe that isn’t concerning! I understand they must see people who are far, far worse than I am. But I feel like it’s dismissing everything I am experiencing and he’s giving me an MRI to shut me up, not because he thinks there’s a chance of something wrong. I don’t know how to take this. Any advice or experience sharing appreciated! xxx

2

It is manky feeling not taken seriously but if he hasn’t found anything definite he’s nothing to guide him. - you know - with the physical tests they do looking for definite signs. Anyway, he is sending you for an MRI to check for signs that way.

Limboland is horrible. Try not to let it get you down and I hope you get answers soon.

3

I have been in the same position as you, so really feel for you. It’s as though everything you are feeling means nothing. Stay strong, as Vithfari said, you are being sent for an MRI which is good news, so fingers crossed you may get some answers. Xx

4

Hi -

Just wanted to comment on this as I had a very very similar experience.

The first neuro I saw told me (after a 9 minute appointment) that he was ‘almost 100% sure’ that there was nothing neurological going on. He told me that his best advice would be to “get on top of my depression” but that he would authorise an MRI to ‘put my mind at rest’.

He sent a letter to my GP (I received a copy) stating that in his opinion he saw ‘no need for concern’, and that although he had organised an MRI he ‘saw no need to see me again’, and was therefore discharging me from the neurolgy services.

I actually cancelled my MRI scan after reading the letter; I felt that it sounded as though he had only ordered it for my peace of mind (he had told me categorically that he did not expect anything to show), and I felt rather foolish, almost as if I was being an unnecessary drain on NHS when specialist thought there was nothing wrong

Anyway, I did actually go for the scan several months later - which ended up showing demyelination. The neuro then quickly recalled me for reassessment, and told me (in an appointment that lasted about 4 minutes) that I ‘definitely had an MS-like condition’ but it was ‘very mild’, and (I quote) “I would only be concerned if something dramatic had happened, like total incontinence”. He made it very clear that in his view, problems with sight / mobility were ‘serious’ but that symptoms that were not ‘functionally incapacitating’ (eg pain, parasthesia, weakness,etc) did not warrant much discussion. He absolutely refused to discuss the pain I had been experiencing in my leg, telling me it had ‘nothing to do with MS’, and that I should ‘take some paracetemol’. Because I had (at that point) only had a brain MRI, I asked if I would need one of my spine. He said no (and again, I quote) " there will absolutely not be anything to see".

3 months later I saw the MS specialist neuro, who diagnosed me with CIS. He said this was partly because I had only had 1 scan done, so there is at this point no real way of knowing if it was a one-off incident or ongoing disease. He did a physical exam, and noted some problems with my foot / leg that he said could be related to MS / spinal lesions (despite the fact that first neuro saying that there was ‘absolutely’ no problem with my foot, and I should ‘take paracetemol and stop blowing it out of proportion’). He then said he wanted me to have another brain MRI and also one of my spine. When I mentioned that the first doctor had previously told me there was no point in doing an MRI of my spine, he told me “I can tell you now, there definitely is a point!”. He was not at all alarmist - he managed to reassure me that he thought my condition was not too worrying right now , but that he absolutely was taking me seriously and would make sure I was properly assessed / followed up (my next mri is next week, follow-up appointment in the spring, and I was given contact details of ms nurse in case of emergency)

My main points would be -

  • I’m really sorry your neuro made you feel like he was being so dismissive. But do not let this put you off going for appropriate scans. You are not being a time-waster, a hypochondriac, or anything else of that ilk. That is not to say that you definitely do have MS; but it is possible, and you should definitely go for the tests.

*Not all neuros will be this dismissive, and if you feel you weren’t treated appropriately, you could ask to be transferred to someone else. Do not let this one experience get to you too much. The important thing is that you are getting the right tests soon.

*Wait and see what (if anything) the scans show, and then let the rest follow from there.

Best wishes xxxxxxxxxxxx

5

Hi I am also going through the same as you. I’m lucky enough to have been to see the neuro privately and he also indicated he thought there was nothing of significant concern although he did conceded there could be some demyelination and that he would refer for an MRI just ‘to put my mind at rest’ I left the appointment feeling as if I wasn’t really believed (my neurological signs all appeared normal) but I know what I am feeling and it isn’t nice! The tingling is awful today, my right foot is throbbing and the dizziness is horrendous - tears not far away! I have read the post on stress and ms. I have a full on job however, I love it and don’t feel stressed by it. I always feel there is a difference. But that thread got me wondering - big project going live, can stress really cause all of this? Still, I have my MRI tomorrow and he said he’d call me to tell me what the outcome is - so at least I’ll have some news before Christmas. Take care and I hope it works out for you. S

6

It’s a horrible feeling when you feel as though you are not believed.

My neurologist said that after my Optic Neuritis, whether I had an MRI or not was my call. Made me feel I was making a fuss of nothing. I explained my other symptoms to him and he didn’t really say much.

However, he is seeing me a week after my MRI to go over the results with me, so that’s something.

I say, take the MRI and then see what’s what. Peace of mind is an underrated thing it seems and being left in the dark without answers can be so demoralising.

Good luck with everything and I hope you get some answers soon

PG xxx

7

Good luck to everyone in limboland.

I had a very similar experience to bunnymitford (and others) 4 years ago. I was suffering with various pins and needles (including right down and across my back, which was weird), neuropathic bladder (nobody seems to want to ask why, despite being just mid-30s at the time), memory problems, slight tremor, tightness in my calf that refused to respond to physiotherapy, dizziness, etc.

The neurologist was incredibly dismissive. After a short examination (where he didn’t check for any of the signs - I’m pretty sure I have Hoffman’s sign) with a student doctor present he practically ridiculed me by asking the student to “come take a look at these eyes, you won’t see many as normal as this in this clinic”. You can imagine how that made me feel!

He let me have the MRI anyway, which came back clear at the time. That should have reassured me I suppose, and for a while I just put my symptoms down to anxiety and tried to get help with psychotherapy and CBT - which went really well but didn’t stop the symptoms.

However, 4 years down the line and my symptoms are getting worse. The tightness in my calf is bad enough for it to be labelled spasticity now. My bowels have joined in the fun and games. I see flashes of light when I close my eyes. Perhaps most telling - I appear to have developed relative afferent pupillary defect, where one pupil is reacting differently to light compared to the other. Waiting to see what the opthalmathologist says about that one. There’s other stuff too, to much to go into here. I very much doubt this is just anxiety?

Of course, I should go back to the neuro, but after last time I really don’t feel like it. For those of you that keep persisting and fighting to get a diagnosis, I congratulate you, because I’m finding this very draining indeed. Chances are there is something wrong with me (and us others in limboland), and maybe not MS, perhaps something else, but nobody in the NHS seems to care or listen. It’s so frustrating! Sorry if I’m hi-jacking the thread, but I really felt like getting it off my chest. :slight_smile:

8

hi newby here, i have dyspraxia and fibromyalgia, and went for physiotherapy recently the physio was concerned that i may have ms as i have what she called peripheral neuropathy so refered me to nuroloy, (i have balance problems, difficulty walking, pind and needles in lower legs feet and hands, very bad memory) i cant remember the rest, the neuro was very dismissive he asked what painkillers i take and i said codeine, which i only take occasionally, and he said my difficulties were all caused by codeine and fibromyalgia, he asked me to stand with my eyes closed and arms outstretched and i got very dizzy and almost fell, is it worth talking to gp about this, the fact that the physio was worried has scared me.

9

Hello

First of all, your physiotherapist shouldn’t have suggested that you might have MS. A physio is not medically trained and basically has no business telling anyone they might have any condition at all. I’m a bit surprised a physiotherapist is able to make a referral to a neurologist actually. Ordinarily, they might suggest you see your GP and maybe ask the GP whether a referral to a neurologist is appropriate.

Peripheral neuropathy, btw, refers to the nerves outside the central nervous system (CNS = the brain and the spine), whereas MS is a disease of the central nervous system. So if your physiotherapist thinks you have peripheral neuropathy, it is unlikely to be symptomatic of MS. Although peripheral neuropathy is in itself something that you would see a neurologist about. Have a look at Peripheral neuropathy - NHS for more information.

The neurologist, on the other hand, is able to tell whether someone has symptoms and reflex reactions typical of someone with for example peripheral neuropathy or indeed MS. In such cases, they would ordinarily refer a patient for more tests. It might be difficult though, when a person has already got diagnoses of dyspraxia and fibromyalgia to differentiate between what is a symptom of the existing diagnoses and something new.

Obviously you could, and perhaps should, see your GP about exactly what symptoms you’ve been experiencing, the information given to you by the physiotherapist and what happened with the neurologist. If your GP thinks you were poorly treated by the neurologist, they might have some idea what can be done (eg referral to a different neurologist, or even the same one, but with a medical referral rather than physio). The GP will hopefully already know you and what your usual symptoms are, so will be in a good position to know whether something is different and needful of more investigation.

Best of luck.

Sue

10

Hi,I would love some advice please.was diagnosed with bells palsy 2012.its come back 8 times seen professor who said it’s not Bells palsy.its facial Palsy. He wants more tests done for MS but my neurologist is trying to get me discharge me.She useless, knows I’m.numb from face down to chest one side said it’s just one of these things!!!since November my face has stayed down, inbetween this I’ve had complete dead right leg that lasts for couple days my right arm very weak.im constantly off balance dizzy. I’m waking up feeling like I’m soaking wet when I touch it I’m dry but hot. Had MRI clear, should I ask for MRI on my spine?

11

Hello

If your most constant symptom is facial palsy, I would expect that to have shown up on a brain MRI (if it was going to at all) rather than a spinal MRI. Equally, if balance and dizziness were to show up on MRI, that would be the brain too (as far as I know).

So I doubt that you’d get answers about your palsy from a spinal MRI.

You could ask for a further MRI, but don’t be too disheartened if the doctors say no.

What does your GP think? It’s probably worth asking for his/her opinion on what the neurologist has said.

Sue

12

I am shocked at how your nero spoke to you both, i know that there are doctors that are still like that, i had a good one he did so many tests and mentioned MS about three times I don’t remember because I took no one with me {My mum is eighty and can’t walk far). She is coming for the next one because it’s not that far to walk. I hope things go well with you both and that you get better doctors, I would make sure you change your doctor. Kay

13

Hi Sue, thanks for responding. My GP furious how slack they been with me she requested urgent MRI and 10 weeks later it came through. I just wanted a MRI on my spine and my Dr requested this today. as I keep getting electric shocks in my neck and back,waking up falling out bed as my leg dead this is not constant but it’s becoming more frequent. I also keep waking up feeling like I’m soaking wet on my legs when i touch it there dry totally weird but this is every night now for weeks. Yes the dizziness is awful. I suppose I have to wait till may to book in with neurology x

14

At least you have a GP on your side. A good GP is worth hanging onto.

Best luck

Sue