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Can anyone help? re recent neurology appt.

Evening everyone. I hope you can maybe help me. I have been unwell since July. This began with a 6th nerve palsy in my right eye and dizziness - as soon as I stood up. This has continued.

About 6 weeks later my right lip droopped significantly and was twitching. I was in hospital for a few days and had tests including CT scan and mri. I didn’t have a lumbar puncture. Was advised that both scans were normal and that I would see a neurologist for follow up. I saw the neurologist in October. He said that my scan looked ok but he would like to do an mri of my neck / spine to rule out a slipped disc - as this could cause neuro problems. This took a long time to arrange, and neurologist said that he would see me again in April. My balance is really poor and my neck sore most of the time. I had my mri yesterday and therefore haven’t had my report back.

I arranged to see a private neurologist last week and received a letter from him today. He has requested several bloods to be done by my GP. However - I felt so upset reading the report from him. He wrote that the diagnosis was pseudo hemiparesis. He said that I had a positive hoover test and positive Romberg test. He then wrote at the end of the letter that he wanted me to be seen by a clinical psychologist. I feel really heartbroken as I think he is insinuating by using the word pseudo etc - and the fact the hoover test was positive that I’m “putting it all on”. I feel so upset and frustrated, and could really do with some help and advice from you all. Has anyone had anything similar in response from neurologist?

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Hi

pseudo is a really upsetting word for a lot of people because as you said it implies people are faking it or in control of what is happening in some way.

Ill try and make my point as best as I can…

when I first saw a neurologist I was really upset as he said all my symptoms where down to anxiety and that is why I have palpitations (I pointed out to him that I don’t have palpitations but apparently that point was irrelevant), after that the docs at my surgery weren’t helpful at all and basically told me to get on with it.

I decided to play them at there own game as I was sure it wasn’t all down to anxiety, I asked to be referred to a psychiatrist or psychologist. When I saw them I explained the situation and after a few appointments they basically said that they didn’t see any anxiety in me to treat and said they could understand my anger. This pretty much meant the doctors couldn’t ignore me anymore so I then saw another neuro who referred me for an mri of my brain and spine.

I guess my point is that it might be worth asking to be referred to a psychologist as recommended who if they don’t agree that it’s functional gives you something to argue with and if you go and it turns out that it helps your symptoms then that has to be a good thing?!

Its frustrating I know but it’s just another way to look at things that might help you feel a bit more empowered!

Good luck!

A neurologist declared that, at the age of 55 I was too old to have MS and that, in his opinion, I had a “functional disease”. (a disorder of physiological function having no known organic basis). Without requesting a MRI or lumbar puncture he sent me to a psychiatrist.

In less than an hour of questions, the last ten minutes of which were obviously there to rule out psychosis*, the shrink told me that I wasn’t ‘depressed’ and sent me back to the neurologist. After a lumbar puncture the neurologist changed his mind and diagnosed MS.

The terms and conditions of this Forum forbid me from making my feelings about this man clear.

*The last question was, “Do you ever hear voices on the radio talking about you?”

On my second opinion some years back maybe 4 cant remember i saw a neurologist and without even seeing my notes said i had FND. I told him i dont care what it is just cure me.

He said once he got my notes he would review and get back to me.

2 weeks later a letter came. basically saying he was sorry he couldnt diagnose me with FND, as i had too many positive results on my tests and wished me well on finding out what it was.

I had my own neuro who was convinced i had MS, but my husband felt i should have another opinion as the first was M.E. that was an ms specialist told me that. My neurologist laughed when i showed him the letter.

then the second opinion i showed him the results and he just rolled his eyes.

he said dont waste your money please we will get you diagnosed its just your not a usual case for MS. I had another VEP test which was again positive. (Had a positive one bilaterally at the beginning of my journey and another one at the end). so in 2016 i finally go told by my neuro i had PPMS, which is classic late age start. so now here i am gone from no MS, to M.E. to FND to PPMS.

Like a daft game of chequers innit.

the point being you cant be diagnosed with FND until all the tests have come back negative for a neurological disorder.

I can imagine what you would like to write about that man believe me, i was FUMING with both of them. I love my neurologist he never gave up on me.

Thank you all so much. This has given me real hope that I’m not actually alone in all of this. I had some tests back yesterday one was positive - so I’m glad it’s giving me some back up!! I’m due a lot more test results next week as well as my spinal column mri - so hoping that I get something that can help. You’re all amazing xx

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