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How can two neuros have such differing views?

Hi Everyone,

This is my first post here, so thanks in advance for reading (-:

A little background:

  • Last year I had a numb/tingly leg and torso a few times. Each time lasting around 1 week to 10 days.

  • This year I had an episode of Optic Neuritis, which I recovered from without using steroids.

  • I was rerffered to a Neuro (Not a specialist in MS) after having had blood tests and an MRI scan and this Neuro advised me that I had one lesion in my brain and one lesion in my spine. Nothing to worry about. He felt I was likely to be at lower risk of future inflammatory episodes. I was referred to another MRI of my entire spine though, which found several spinal lesions (around 4 I think).

  • The Neuro came back and said, that I was now in fact in the higher risk category group, so at higher risk of developing MS, but that I should go away and live my life.

  • I decided it would be wise to seek a second opinion, so I went to see one of the best Neuros in the field for a second opinion, and it seemed she was pretty sure I probably have MS already now. As she counts my leg episodes as relapses.

  • She is now going to review all scans again before she can give a diagnosis, but she seemed very sure that it’s MS.

My question is, how can two Neuros have such different opinions? which one do I trust? if the specialist comes back and says it is MS, can I trust that?

Has anyone else had similar experiences?

I know I have to just wait now and I am fine with that, but I feel like I might need a third opinion…

Thanks!

hiya

10 different neuros could tell u 10 different things.

i would go with the one that i like as a person/human!

patient and dr matching is down to luck i am afraid!

ellie

Hi Emily

While in general, I agree with Ellie, the one you like / trust is the one you believe, in this case I’d go along with the MS specialist. I should think that’s why you went to see her? Ellie is also absolutely right that 10 neurologists would probably come up with several different diagnoses and probably 10 different thoughts about what you should do next.

Whichever neuro you believe though, I would have thought that one of them at least would have suggested that you have CIS, that is Clinically Isolated Syndrome. This in itself can lead to MS, but more importantly, means you could get a disease modifying drug (DMD). Which means that while you are going off and enjoying your life (albeit with the fear of MS having entered uninvited) you would also have a small safety blanket of a drug which might ward off further relapses. Have a look at https://www.mstrust.org.uk/a-z/clinically-isolated-syndrome-cis

People with a CIS diagnosis don’t get the full range of DMD options as do people with an MS diagnosis. But they do have at least the basic beta interferons or Copaxone (or Aubagio, but that does seem to come with more side effects for no extra benefit apart from it being an oral treatment).

But, before you decide which neuro to believe, I suggest you wait until the MS specialist has decided whether she thinks it’s MS. If she does, then taking a DMD is a wise course as even neuro #1 thought it could become MS. Maybe don’t throw one of the high risk DMDs at it, but Tecfidera is an excellent initial DMD.

Sue

Hi Sue, Hi Chocorange,

This is very useful information, thanks a lot. It’s such a difficult disease to diagnose I guess, so there will be differing opinions.

The second MS specialist Neuro has sent me for an evoked visual potential test now. I will see how that goes and carry on as usual. It’s such a weird feeling, as I am literally waiting for something else to feel weird… I bet a lot of people feel this way.

I do trust the MS specialist more for sure though- and I was also always of the opinion that even if it’s ‘just’ CIS, I would try the drugs. That’s why I went to see the second Neuro. I just feel that I want to do EVERYTHING I can to avoid it and stop it in its tracks as soon as possible. The MS Neuro actually also mentioned Tecfidera as something we could try when he ‘most probably’ diagnoses me the next time he sees me.

Another interesting thing, the first Neuro was super dismissive of the Radiologist’s reports- is this also usually how it goes? MS Neuro actually knew the Radiologist who did the scan and really rates him. Both scans I had, confirmed that there is evidence of demyleation (sorry if that is the wrong spelling).

I feel pretty fine though to be honest. I would say fatigued and very vigilant of my body.

I guess it’s time now to definitely say goodbye to my daily cigarette though…

Thanks for reading! sending good vibes to all (-:

Emily

I feel for you EmilyR. This is a long and stressful journey. You learn new things as you go along.

My GP is convinced, as I am that I have ms BUT my neuro is dismissing the radiologist’s report on my head MRI. I have been having symptoms, and still have some of them for almost 5 months now. My foot drop has never gone back to normal etc.

I am hoping to be referred to a neuro in London who specialises in ms.

Good luck.

Marjie x

That can be a very hazy line, the one between ‘there’s been a bit of de-myelination going on in there, but with a bit of luck it won’t happen again, so good-bye and let’s hope we don’t meet again’ and ‘bad luck, it’s MS’. For sure, it tends to be more of an art than a science, or so it seems to me. Where a range of reasonable expert opinions is possible (as seems likely here) then they can both be right, even when they’re different. And they aren’t as different as all that - one thinks you have a significant risk of developing MS, the other thinks thinks you’ve probably crossed the line into having it already. I think you can be reassured that the differing opinions do not necessarily mean that one of your doctors (at least one of your doctors!) is talking cobblers.

Many of us (me included) will have spent some time in that no-man’s-land in one form or another, and I well remember that it isn’t fun. You’ve got a lot to get your head around, and I know that this kind of uncertainty does not help, but sometimes life just isn’t black and white.

I think this is a moment to step back and let the thing play itself out for a bit. See what the MS specialist says when she has reviewed the scan evidence. Maybe she will confirm an MS dx, maybe she will want more tests, maybe she will be cautious and decide on something more like the first neuro’s ‘wait and see’ approach (time being, as ever, the best diagnostician). Whatever - it is as it is. None of this affects whatever is or is not the matter with you, so try not to stress to much about the process itself - there isn’t one thing you can do to affect the outcome either way.

Alison

Thanks guys. I am just going to wait and see how it plays out. It just seemed so strange that they had different opinions- however, in reality, they aren’t that different really. There does seem to be a fine line. I hope it never gets to it and I just end up ‘waiting and seeing’ and nothing else ever happens.

I really feel fine (apart from tired). So it’s weird to even imagine I have MS. As for symptoms, they were all so minor and didn’t last long at all. So, hopefully a good prognosis either way.

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Guzlover, I am sorry to hear this and especially about your foot! strange how they can dismiss MRI’s just like that. Again, if you saw a different Nero, he/she, might not dismiss the report (like in my case).

I actually went ahead and paid for my MS Neuro appointment. I don’t have time to try to convince my GP or anyone else that I need a second opinion. It was so easy, I just called and made an appointment. (mine is also in London).

My GP said he wouldn’t refer me on the NHS (he knows I have private medical insurance, which is how I saw the first Neuro, and basically he thinks I can afford seeing a Neuro and paying for it myself). Technically, the NHS owes me one Neuro appointment… but I just cannot be bothered to fight.

Good luck with your referral. I hope they do it soon.

Hi EmilyR, it just gets more of a nightmare for me. I have just got a letter from my present “neuro” who waffled on about a nerve test he wanted me to have. He seemed to think my drop foot could be a trapped sciatic nerve, bearing in mind I have had NO leg pain ??? He is totally ignoring all my other symptoms, and I have many.

Anyway the final sentence says it all… “I will arrange for you to be referred to a NEUROLOGIST.”

OMG who is this man who I was referred to by my GP and he himself told me he was a neurologist.

I am going to hopefully see my GP tomorrow.

Marjie x

I went to see my GP this morning and queried being referred to a neurologist by my so called neurologist. My dear GP said he really only deals with strokes and he thinks I am too much for him. Well what can you say to that lol. We are in the process of finding a neurologist who specialises in ms in London at the moment, lucky enough!

Marjie

Hi Marjie

​I assume the test is a nerve conduction test.

It’s odd though, drop foot is a fairly common MS symptom. Maybe there’s something in your physical neurological examination that didn’t seem to fit with a typical MS drop foot. In general, it’s the peroneal nerve which affects your ability to pick up your toes when walking. It runs from just below the knee down to the foot.

Is it possible that he’s a neurologist but wants to refer you to someone who is more of a specialist? I hope so. Otherwise, you must feel like you’ve blinked and woken up in an alternate reality. One where people introduce themselves as one thing, then change their mind.

Hopefully your GP will be able to explain it. Assuming the GP remains a GP and doesn’t suddenly become a different type of doctor.

Sue

(I’m not trying to diminish your confusion over this whole issue, I honestly share your feelings about what the hell is going on with these doctors!)

Hi Sue, Thanks for your reply. When I first went to see the neurologist he seemed convinced as did his junior doctors that I have ms, after a physical examination. But on my second appointment he acted very weird and would not look me in the eye. He said he thought the drop foot was being caused by a trapped sciatic nerve, hence the nerve test. But I have had no pain at all. He was not interested in my other symptoms which are more worrying for me. I asked if I could have a cervical MRI but he just ignored my request and said he would organise an LP if I am happy to have one. After seeing my GP today and trying to make sense of who he actually is, my GP said he thinks I am too much for him as he normally deals with strokes. He is also quite elderly. Not that I am knocking elderly as I am in my early sixties too. But I think after a lot of reading that things have changed so much in the past 10 years or so for ms.

I am lucky to have a good GP who listens and records all my symptoms. And is keen for me to be seen by a neurologist who specialises in ms.

Marjie x

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To be honest Marjie, it sounds like you will be much better served by seeing an MS specialist. I think we expect that a ‘neurologist’ will be the kind of expert we need. But as time goes by I think I am learning that neurologist isn’t enough of a definition. We need an MS specialist. I’ve recently asked my Neurological Rehab specialist if I can stop seeing my MS specialist and just see the rehab doctor. He agreed but said we’ll not shut the door on the MS specialist because I might need advice that the rehab doctor can’t provide. (I’m what could be called in an ‘advanced’ stage of MS, no DMDs any more and I’m quite disabled.)

This seems to demonstrate that the neurologists themselves do recognise that they have their limitations, depending on their specialisms. And if your elderly stroke specialist wants to refer you to an MS specialist, then you’ll probably get the best treatment.

So perhaps not as bad an outcome really as it seemed at first, a bit more delay, which is crap, but ultimately you will be under the care of the neurologist best suited to look at your tests and do a thorough physical exam. S/he will also be in the best position to recommend drugs if you are diagnosed with MS.

Sue

Hi Sue, I think you are right, even though it will take longer, it will be better to be seen by an ms specialist.

Thank you for the way you help all of us newbies,

Marjie xx