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Neurologist dismissive of symptoms

Hi all,

Just wondering if anyone else gets frustrated with their neurologist for dismissing your concerns? I’m seriously considering asking for a transfer to a different consultant as every time I see him he makes me feel fobbed off. He never accepts what I’m telling him is a relapse and us the term “non specific” a great deal.

For example today I related how at the end of Jan I had a few days of extreme stiffness mainly in legs and core, which made standing from sitting, sitting from laying, and walking very difficult (I spoke to the ms nurse at the time). It did improve but I’ve been left with reduced ability compared to prior to this episode, with noticable stiffness in my legs for coula couple of hrs each morning. I’m 38 not 78. He said “hmm, stiffness is pretty non specific and this probably wasn’t a relapse”

Its just frustrating, I am managing but do worry things are progressing, he refuses to offer an MRI as he believes it won’t add anything. I want to feel validated not dismissed. I’m actually thinking of asking to transfer to someone else but fear it will be the same. I end up upset after every appointment and think what’s the point in attending?

What are your experiences? I’m with The Walton Centre.

Definitely find a new neuro. I went through several before finding one who’d listen to me, and that’s very important.

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you need to communicate with your neurologist. This is a two way process, they are medical experts but you are the expert of how you are feeling. I understand that these consultants are busy and have limited time, but this is your life and health, so if you are not confident and comfortable with the neurologist try to find a way to be referred to another. My first neurologist made me feel like a fraud and never offered any real support, so I changed to another who seemed out of their depth and comfort zone so I changed again. Finally found someone who listened, was willing to try stuff and bluntly told me when I was being daft. Flipping perfect. Then we moved and i am hoping that my latest neuro (who seems nice as well as competent) works out ok :white_check_mark:
mick

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I have never been seen by a neurologist, but reading some of things about neurologist on this forum is making me a bit worried (I’ve been referred to one). Surely they can’t be all that bad if the evidence is there. As i say i have never been in front of one so know nothing about them. Hopefully my luck holds the day i go before one.

Are you on a DMT? When did you have your last MRI? They (neurologists generally) seem more keen to do MRIs to people on DMTs to monitor the success or otherwise of the treatment. Those not on treatment seem to be the ones that get a second-rate service, or sometimes no service at all.

My one and only MRI was pre diagnosis in 2016. I started copaxone 2018.

I have had many many symptoms for just over 4 months and my gp’s first referral to a neurologist was rejected, this was because 2 yrs ago I had memory loss issues and they said it was the same issues and there was no change the last time they saw me? I am on 400mg of pregabalin for nerve pain so how they made out this was memory loss is beyond me??? Anyway I didn’t give in, I had a head MRI which came back normal nfa but another urgent referral was requested to neurology, this time I got a letter to say I had to make an appointment, I called and have a telephone consultation on the 12th July. I am so nervous that like you I am going to be just fobbed off and am making sure I am prepared with a timeline of main symptoms and how they have worsened , this is also under Walton

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Have told Neurologist how they wake you feel?

So 5 years ago. That’s quite a while, so you’re clearly not a demanding patient! I think probably time to request a transfer to a different neurologist, as you are clearly not happy with the current one.

I empathise with your frustration. Back when I was diagnosed after 4 strokes, 90% total body muscle loss, loss of ability to talk/eat/drink, sight and hearing loss I was told that MS relapses can not possibly affect both sides of the body at the same time. Only a few months after remission the same thing happened again and still no belief. I get the feeling this disease is the unbelievable and may not really be understood for a long time. One positive is Neuro’s do now recognise relapse on both sides of the body at the same time - baby steps in 10 years is better than nothing but there simply aren’t all the answers we want to hear nor the support to help us try and find them ourselves but possibly the future will get better for us all.

Thanks, yes you are right it is not fully understood at all, and my mum.also has MS with a different neuro and says hers is like mine, no symptom is ever due to her MS according to him. Hence my reticence to try and change if they are all the same! I know some people probably play up their symptoms, and they must hear all sorts of stuff a lot of it vague…but surely they can accept we are the experts of our own bodies and what is and is not normal for us.

I don’t like to argue with consultants, but I do work in healthcare myself so do have confidence to talk to doctors. Perhaps I wasn’t pushy enough. But a year ago I did push for an MRI and clearly gave my reasons for wanting one (I’m a knowledge is power type person and would prefer to know than wonder what is going on). He replied “I’d agree with you if it would tell us anything” . His ethos is treat the patient, not the MRI, which I do understand, however for me, seeing new damage, or not, would inform my decision on whether to go on stronger DMTs and risk the side effects.

I would have thought that a follow up MRI scan might show any changes from the first one, which could assist in managing a therapeutic response. I am respectful of their expertise and non confrontational, but it sounds like you need to make a fuss.
M

Blimey - I agree definately different Neuro. Bouds sings the praises of Walton centre I wonder who she sees
My experience is relapse - dodgy right leg - GP prescribes steroids - neurologist says don’t take them until you have an MRI to see what’s going on you may need stronger DMD - had MRI yesterday - I live abroad at the moment - so not sure whether to take steroids now as don’t want side effects and think leg might be getting better. Sick of it
Socially distanced hug
Min xx

Hi, I’m new to the site but looking for advice, I’m a carer for my husband who has PPMS, diagnosed 4 years ago, but looking back now he did have symptoms but was fobbed off and given antidepressants, he also has an underactive thyroid and is on 100mg a day Levothyroxine. I’m pretty certain both are connected. The MS nurse wrote to the neurologist requesting an MRI for him to be treated with Ocrevus, after having the MRI last month he was told he isn’t eligible as it isn’t showing any activity, which sounds good but this last month or so he is getting worse, can’t walk much and losing his balance. He seems to be closing one eye, we have an appointment with an optician tomorrow. He also has bladder problems, he’s constantly going to the loo, thinking he wants to go but can’t, and then has an accident. He’s waiting for an appointment with the incontinence nurse, but still waiting! He’s gone worse after having the covid jabs, don’t know if this is a coincidence or not. Any advice would be helpful.
Thanks

There appear to be tight rules laid down by NICE regarding who can be given Ocrevus. A helpful article here:

Just out of interest, where were his lesions originally? Did they do both a brain and spine MRI this time around? PPMS tends to have more lesions on the spine and fewer on the brain, so I hope they did both.

Also, this explains what your husband might expect by way of treatment options. For non-active, but progressive they should be discussing rehabilitation strategies to help maintain function.

https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Primary-progressive-MS

As regards the Covid injections, I saw my new neuro a few days after having my second injection. Both injections really ramped up my fatigue levels. This neuro said that he’d been seeing that with quite a few of his neurological patients.