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Confused by neuro appointment

Hi all, I’m really confused by a neuro appointment I had yesterday and wondered if anyone could shed any light on it for me. I’m undiagnosed and my symptoms started 14 months ago and have got steadily worse ever since, particularly my balance and the strength in my legs but also a buzzing in my toes (which is now there every morning when I first wake up) and other symptoms such as a burning, prickly feeling in my hands and arms. I’m struggling so much and had pinned all my hope on some answers from yesterday’s appointment and now feel I’m right back where I started. Because I had an MRI on my brain last June which was clear the neurologist is adamant there is no way it’s MS, but I’d been previously told by my GP that one clear MRI could not rule it out. The neurologist also said my symptoms don’t present like MS even though they are typical of the condition. I don’t understand what this means. He said something about symptoms appearing in clusters if it’s MS and although I feel some of my symptoms do appear in this way, the main issue of my walking problem has been ongoing since the onset. I know I should be over the moon at the news he gave me but I’m a bit concerned that a second MRI may have shown something as it’s been almost a year since my last one, and I’m also concerned that I didn’t think PPMS presented in clusters…I know very little about it though and am probably completely wrong, which is why I wanted to ask other people’s opinions. He says I have a neurological dysfunction with no physical cause and I’m to see a physio and a psychologist. I feel like he thinks it’s all in my head because my scan was clear last June and now I have no idea how to handle the prospect of having some unnamed condition that has quite frankly both ruled and ruined my life for the last year. If anyone has any thoughts, I’d be really grateful. Thank you. Bec

Hi Bec

I’m sorry you’ve come away feeling unstaisfied with your neuro review. Unfortunately this isn’t always uncommon so you’re not alone. Let me try and clarify some of the confusion at least for you:

RRMS (relapsing remitting MS) - is where you get an episode of symptoms occuring. They may spread over the course of time and need to last longer than 24 hours. As the title suggests these symptoms may go (if you’re lucky) or improve leaving something residual behind.

PPMS: is a gradual progression of symptoms with no improvement.

What the neuro maybe trying to say is usually symptoms don’t come and go very quickly and usually it doesn’t affect lots of parts of the body all together as that would be a lot of different areas of damage. Ie: someone having pins and needles in there R hand then L foot then forehead then lips moving around is less suggestive of MS because the symptoms don’t move araound like this though pins and needles and numbness does occur in MS. However someone with pins and needles with their L foot with worsening to their L leg and bladder issues may be more MS like - does that make sense?

Your GP is correct in saying MSers can have a normal first MRI’s though the figure is I think around 5%.

In terms of the treatment the neuro has advised:

I would be inclined to go (difficult though this is - and I can sympathise because my MRI showed non-specific damage and my neuro was terrible, I went to another neuro and I’m possible MS now so still no firm diagnosis nearly 2 years on)

  1. because if everything is fine and the neuropsych team think you’re okay you have grounds to say it’s not in your head to your GP and push for other investigations or referrals (have you had full blood tests to rule out eother things like vitamin deficiencies, thyroid etc). You could ask for a spinal MRI as though MS’ers are more likely to have issues with the brain they can have problems with their spinal cord depending on the symptoms. You could ask for a second neuro opinion.

  2. People who have symptoms because of psychological issues aren’t making things up. They are very real symptoms and can be very debilitating.

Last thing I’ll just add is you don’t need a diagnosis to get help with your symptoms so ask the GP for meds to help you if things do get unmanageable. Unfortuantely it’s not an easy journey because many conditions can give rise to symptoms like MS.

Good luck

Reemz

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Hi Reemz, Thank you so much for your reply. It’s so helpful to have someone explain things in terms I can actually understand! My worry is that my symptoms are all very much based around the fact that I’m constantly losing strength in my legs, combined with a balance problem, and that other things I’ve mentioned to the neuro were predominantly issues that have arose from this. For example, I spoke to him about a feeling that my head was falling backwards when I walk (due to the balance problem, although I probably didn’t explain that properly and it may have seemed that this was a completely separate symptom) and I’m really concerned that I’ve not explained it properly and he’s ruled out MS based upon a ten minute conversation with me. I do also have buzzing and pain in my toes on both feet and (at the risk of sounding silly) my shins are ridiculously itchy especially during warm weather or when in hot water. It’s all pretty much in the same area, except recently I’ve also had a burning/prickling sensation on the backs of my hands. Am I right in thinking that lesions usually occur predominantly on the spine with PPMS? Again, I know so little about it and I was too gobsmacked at the neuro appointment to ask. And can lesions occur on the spine without there being any on the brain? I will definitely go ahead with the physio and psychology as he suggested, and I genuinely hope he’s right in what he says about it not being MS…just can’t get rid of this niggling feeling that it’s not been as thoroughly looked into as I’d hoped. I’ve had blood tests for pretty much everything over the last year or so and nothing came from them. I’m glad you’ve found yourself a neuro that you’re happier with and hope you can get a concrete answer soon. It’s so frustrating to not know what’s happening. Thank you again. Bec x

Reemz has answered your original questions so I’ll stick to the later ones.

People with PPMS are more likely to have spinal cord lesions than people with RRMS, but they still generally have brain lesions too, albeit fewer overall than average.

Some people with MS only have lesions on their spine. (One paper I read said it was as much as 25% of people.)

Given that your predominant problem is with your legs, I would have thought that a spinal scan was warranted, especially if you haven’t already had one. I believe that GPs can refer patients for spinal scans, so this may be your quickest route to getting more information that you can work with.

I agree with Reemz that it is probably best to see the physio and psychologist. It would also be worth having a look at the www.neurosymptoms.org website which explains functional neurological disorder really well - see if it might be right.

Do speak to your GP about a second opinion - see if he/she thinks it would be a sensible move or if waiting for a while would be better.

Karen x

Hi Karen, Thank you so much for the info. I think I’ll make an appointment with my GP and see what he thinks about the spinal scan. I was really surprised when it wasn’t suggested by my neuro yesterday. I did suggest another brain scan but he told me because it was clear after the onset of my symptoms, it would still be clear now. In retrospect, I should’ve asked why they’ve not done a spinal scan but because he didn’t suggest it himself I assumed the lesions appeared on the brain first. Anyway, thank you again. Bec x

Hi Bec, I was just wondering things are for you now and also tell you not to give up hope. I had a normal brain scan a year after the onset of my symptoms and ms was ruled out. I was thrilled, I then received a diagnosis of a rare condition called erythromelalgia. Not many medical professionals know anything about it so every time is presented with a new symptom they just put it down to that. Last may I was given another brain and spinal MRI in London (not my local hospital) because they had an erythromelalgia specialist there. He left the hospital before my results were ready to review and sadly nobody else bothered. After fighting for 16 months to get them sent to me, my gp and pain specialist and referring neuro I finally got them, not a letter but the clinical findings which I didn’t understand. Said I had 11 white matter lesions consistent with demyelination and satisfy the McDonald criteria for dissemination in space. I emailed my neuro and visited my gp who both said its a high possibility I have ms but will need to see a neuro that specialises in multiple sclerosis, I am still waiting 6 weeks later. Thankfully my appt is in 2 weeks but it’s been a terrifying 6 weeks especially because I had no idea this was a possibility after it was ruled out 6 years ago. I do however have many more ms symptoms and have seen numerous different professionals who only treat the one symptom and don’t look at the whole me. Did you manage to persuade your gp to order a spinal MRI?