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Please help

Hi everyone,

seen a new neurologist today. He told me that ms protein was present in the CSF but I don’t have ms. He said that I might never get ms. Has anyone else ever experienced this??? Any help would be appreciated.

then went onto tell me my symptoms are all in my head that my mind is telling my body to do these things. . I’m devastated by this and feel like he’s discarded my symptoms and basically told me I’m crazy.

Hello Danielle

It’s quite difficult to answer you because there’s too much we don’t know. Have you had an MRI? And was the lumbar puncture positive to Oligoclonal bands in the CSF but not the blood, or in both? It sounds like he’s had you completely confused with the science of it and left you confused.

Is he saying you have Functional Neurological Disorder? See: https://fndhope.org/

What will happen next is that the neurologist will write to your GP with a report on the tests s/he has done and conclusions s/he has come to. This might make things a lot clearer.

Sue

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Hi sssue

had mri all clear, the lumbar puncture results said there were Oligoclonal bands present and IgG index was significantly elevated. The new consultant refused to go into detail about the bloods or the lumbar puncture results. Yes he’s saying I have a functional neurological illness and told me to go to neuro symptoms.org.

He wants me to come of all my meds and said it’s my brain that’s telling my body I’m sick basically it’s all in my head. The consultant I seen today wasn’t the one who requested the the lumbar puncture or mri he’s picking up dr watt caseload. He was totally disinterested in what I had to say or any of my symptoms. He said he’s referring me to a psychologist he thinks I’m crazy. I’ve done nothing but cry but I know I’m ill I spent a month in hospital. I’m just so lost right now xx

Ahh Danielle, I’m sorry to read this. I can only suggest you see your GP as soon as possible to ask for an explanation & reasons why the second doctor was so dismissive. You are entitled to attend another hospital if practical and most certainly entitled to see a totally different Neurologist Consultant.

I wish you well. Chrissie

Thanks Chrissie, I actually said to the doctor so you’re telling me that my mind is telling me to be sick? He said yes I want you to see a psychologist. I also said so your basically saying I’m crazy he just looked straight through me while I sat there sobbing. I’m thinking I’m going to have to go private anyone any recommendations?

Cant get an appointment with my gp for 2 weeks thankfully he’s been excellent in supporting me xx

damn missing bedside manners!!

the neuro had no professional courtesy whatsoever.

you can put in a complaint with PALS (patient advisory and liaison service) at the hospital where you saw the neuro.

Hi Danielle, if you can cope for a couple of weeks, it’s worth the wait as GP has proved his support.

Rest assured you are not crazy or going crazy. When I first saw a specialist after an MRI showed shrinkage of my left Temporal lobe but no indications of MS, it was explained that messages from the brain can get mixed up, and my brain was telling my body it was in pain. Even though It feels like agony, It isn’t literal pain. It is a fault in my brain, not my imagination. I was given meds to help to stop the mix up in my brain & some Neuro painkillers.

For me, I’d approach PALS if you feel you’ve been medically neglected. But after you’ve seen someone else and have the correct diagnosis & support, you may be satisfied with our free NHS. Going private can cost a small fortune, i.e £150 per 30 minutes to speak to a doctor, that’s £5 every minute!

Thanks carol and chrissie. Everything that doctor told me yesterday was a complete contradiction. I don’t have ms but I do have Oligoclonal bands and a signicantly elevated IgG index ad well as saying that ms proteins are present and he will send me in a year for another brain scan. But then told me it was all psychological, so if this is all psychological why didn’t he discharge me from the neurology department?

Hi Danielle, What Chrissie said is true, you are not crazy, you are not going mad, OK? What the consultant told you was stupid and lazy because he couldn’t be bothered to explain it properly. So I’ll do my best to explain what he should have. A functional neurological disorder (FND) is where patients get symptoms such as weakness, movement disorders, sensory symptoms and blackouts. However the brain of someone with FND is normal, but doesn’t work correctly. This is called ‘medically unexplained,’ FND is common, and accounts for up to a third of outpatient neurology clinic attendances, and associated with as much physical disability and distress as other neurological disorders. Physiotherapy is particularly helpful for patients with symptoms like muscle weakness, walking disorders and pain. And there are other treatments which can help. It seems to me that your biggest worry is that your symptoms aren’t being taken seriously. They are, but there is nothing a neurologist can do about it because there is nothing wrong with your brain. It just doesn’t work properly. That does not mean that your brain is sick. It is not. I hope that helps a little bit. Best wishes, Anthony

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Hi Anthony,

Thank you for for explaining that to me. You’re right about my symptoms not being taken seriously but I’m also concerned with my Lumbar puncture results. They said Oligoclonal bands were present and IgG index was significantly elevated. The consultant said that just meant ms proteins were present. He wouldn’t discuss this any further nor would he discuss my blood results. It’s all so complicated I’m struggling to process all the information.

It sounds like the neurologist needs some help with his brain, not you Danielle.

You are likely to receive a copy of the letter the neurologist sends to your GP over the next few weeks (unless they decide to sit on their hands for a bit before sending the letter out). This might be a bit more informative than he has been in person.

Some doctors just have the emotional intelligence of a dung beetle. How dare anyone tell you that it’s your brain giving your body confused signals, but not explaining it properly!!

Definitely see your GP. Ask for a referral to physiotherapy.

And try not to worry too much.

Our brains and nervous systems are a foreign land to us all, it’s not just you. Keep talking to us on here, we won’t know everything you need to learn, but we’ll try.

Sue

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Hi sue He had the bedside manner of a pig!!! I’m on the ball with the gp and I’m complaining to the trust. You lot have all been amazing help and support so thank you all from the bottom of my heart. I will definitely stay on here Danielle

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He cant tell you that you have MS as here is not enough evidence. He is a bad doctor with no manners.

Basically:

If someone’s CSF doesn’t have these proteins, though, they might still have multiple sclerosis – 5% to 10% of people with the condition never show signs in their spinal fluid.

Also, these signs can show up in a number of other diseases, too. So a spinal tap by itself can’t confirm or rule out a diagnosis of multiple sclerosis.g It must be part of the total picture of testing for the disease.

As you also have an elevated IgG index you could have something other then MS. This type of result could be other things, like lymes disease, even lupus.

He is hedging his bets as your MRI was clear. DOESNT mean you dont have MS they just may not have seen a lesion but it might be there.

Also you cant diagnose anyone with a physchological disorder if you have POSITIVE proteins for MS in your csf. How the hell does that work.

You need to see someone else. I would probably wait a few months let the dust settle, go for a physch test it wont hurt and shows willing. Whilst you are having that done you can keep a diary of things going on.

If it is MS it will show itself soon enough, but you cants have functioal disorder with a positive MS protein test. IS this guy going to say it was your brain that put it there lol.

Did you just have head MRI?