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Does anyone else feel they are not believed?

Hi hope all of you are as well as can be.

I have been to see the Neuro Physio. today and although she was as helpful as she can be, I came away feeling that she does not totally believe me. I have been seeing this same person for several years, but I always have a problem trying to explain things.

To start with the first thing she said was " You walked in here absolutely fine",and when I was trying to explain about all the pain I have she “jokingly” said "I will just have a doze while you are explaining " .

I don’t know, maybe it is just me being pathetic, but sometimes I don’t feel as if I am taken seriously, but it could be my fault as I have always tried to make light of everything.

Does anyone else feel like this?

Jaycie x

oops Jaycie - my message seems to have latched on to yours!

l think l must have seen the same Neuro - unless it is part of their training - make people with MS feel like an idiot. l went 26yrs from diagnoisis before seeing one - and he kept me waiting nearly 2 hrs - before he turned up. Then he dropped off to sleep!! when l was explaining why l had come to see him. lgnorant barsteward. He is one of the top Neuro Consultants in Warwickshire.

He hadn’t heard of vitamin D3!!! when all talk was about a D3 deficiency in pwms. He arranged for me to be admitted to the Rehab Hospital - [no not that sort of rehab] so they could monitor my sleep patterns as l suffer with insomnia. l was there 3days and nobody had done anything about monitoring me. So l spoke up - and said if they were not going to do it l might as well go home, as l was in a high-dependancy unit. Lots of noise, and interruptions going on 24/7. l was not allowed to attempt to get about as they said l was ‘high risk’. Well for me - l need to keep moving otherwise l would just seize up. l could feel my legs getting weaker. When l said ‘right l am going home’ they fetched this consultant - and he said l was upset because l could not face seeing how l would end up!!! That l was in denial. l refused to ever see him again. Should have reported him. Thankfully, l had driven myself there - so my car was in the car park. l drove away feeling like Thelma and Louise. l sang all the way home with Radio 1.

so the NEURO. physio, doesn’t understand how MS works, that our walking varies wildly, this health CARE ‘professional’ was bored by your explanation . correct me if i’m wrong, but isn’t MS the most common of all the neuro conditions, boy did she pick the wrong speciality! you aren’t in any way in the wrong, i’m outraged on your behalf. the only way for them to understand our personal experiences is if they listen, god i’m fuming for you.

you are not alone, so many of our problems are hidden and it’s all too easy to find yourself not being taken seriously. this is one physiotherapist in dire need of retraining, or retirement.

wendy xx

god that’s terrible, i think that i’d have been carted away by ‘men in white’ or the police. you must have been crawling up the walls. good for you, singing all the way home, i’d have been a wreck.

what the hell is wrong with these useless idiots, if they’re completely lacking in kindness, warmth and sense, they should go and work in solitude, where they can’t do any bloody damage, shame they don’t need lighthouse keepers nowadays.

xx

um complain about this! She should not have said this, joke or not. She should know how varied walking can be with MS and the last comment is completely unprofessional.

People with MS need to be more in your face sometimes for people to realise they are being idiots :stuck_out_tongue: and to make people believe they have a disability.

probably just me but I would have asked for her boss and made a complaint, but I can be pretty loud when it comes to people saying/doing the wrong things in a professional environment. Don’t get me wrong, I don’t complain for no reason, but what she said was wrong of her to say

Sorry to squeeze in here. I’m on my tablet and it’s easier.

What she said to you is no joke. She has become to familiar with you. There is a line between professional and client-she’s crossed it.

I would be speaking to PALS about this. If you prefer not to take it any further then see someone else in future.

She is there to help not judge you.

To me it reads like a form of bullying. Goodness knows how she behaves with other clients.

It is possible she feels that she can’t offer you anymore help-I don’t know. There are ways of explaining this in an appropriate way.

Take care xx

Strange, it didn’t post further up.

Hey ho

I don’t feel I am disbelieved as such, but I must say, I don’t get on with my neuro physio, and won’t be going again. If I reach the point I have to have it at some point in the future, I’d rather pay privately than see her.

I’ve only mentioned this here recently, but when discussing some intractable foot pain I’ve been having, I explained diazepam helps. She asked if I was sure, or: “Only thought it does”.

I was gobsmacked - there’s no answer to such a dumb question. And very judgmental, as she obviously doesn’t approve of me being on the drugs, and thinks they are just masking the problem, rather than helping.

They should all be working together, and not criticising anything anyone else prescribed for me that helped. It shouldn’t be called into question when you say, honestly, that something you were given helped, as it’s all relevant to what the underlying problem might be.

I’m afraid I came to the immediate conclusion she’s not very bright, and also that she thinks her way is the only right way, and people shouldn’t be using drugs. And I do stress that I’m using, not abusing. She shouldn’t be challenging legitimately prescribed drugs, especially when I report I’ve obtained some relief from them.

Tina

x

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You’re keeping her in a job and the very least you should expect is to be shown respect. Ask to be seen by a different physio next time.

Jan x

I have a great neuro specialist physio.

Having said that the NHS won’t provide me with physio, so I pay for mine.

One problem is that it is generally expected that something like 30% of patients seen will be exhibiting symptoms that are not due to disease. Perhaps breeds a cynical search to identify the approximately ‘one in three’ to quickly ‘weed’ them out.

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Oh that is awful.

She sounds like a perfect candidate for an Atos Assessor!! They don’t believe either, unless it is completely obvious, you cannot possibly be struggling.

I just laugh at these kinds of people, they prove how much they don’t know about the things they should. If we have to explain ourselves to so called medical professionals, there is just no hope is there?

Sam x

hiya

sadly yes. it was my neuro! said it was all in my imagination. 11 attacks in 2 years. 2nd opinion sought. original mri showed several lesions (the same mri that first neuro ordered!!

some folk are just not human!

i hope you find ur way soon-i know how it feels to not be believed. take care.

i had a physiotherapist who thought i was ‘holding onto my pain like it was an old friend’?! perhaps i should have tried the same route as anon.

Had a professional colleague been observing the session, would your neuro-physio have said that? Exactly. Poor behaviour, unkind and very unprofessional.

Alison

Hi

That’s really awful. I think you should escalate this. Have you considered going through the NHS PALS service?

I’m lucky because my current one couldn’t be nicer or more understanding. She really took the time to find out how MS was affecting me and seeing if there was anything to be done which wasn’t already in place, even offering to help with benefit applications etc. Of course this means that by my next scheduled appointment she’ll have been transferred off somewhere to be replaced by the usual breed of dysfunctional neuros.

Hope you get someone more understanding next time.

JZ