neurologist advice

[Monkeyfeet1]

hi everyone

I saw my local neurologist last week.

I mentioned my eyesight and was ignored.

She poo pooed me having Cinnarizine for dizziness even though she prescribed it. She’s accused me of drinking heavily ( i don’t drink alcohol) and won’t believe me when I tell her I don’t have blood pressure or urinary problems and am pleased I could prove one of them with blood pressure readings from my GP.

Despite asking questions she dodges them and fails to answer timeline questions. I’m really worried that she’s the wrong neurologist for me. What do I do? Happy for private messages if you want to mention names.

I feel lost.

Thanks.

[Paul_and_Sue_Wood]

Hi,

Sue and I have moved to a different neurologist in the past after a good chat with our GP.

Worth a try

Paul

[Hidden]

Hi.I'm sorry to hear this. Some medical professionals aren't very professional. You can complain. I think it's probably via PALS but if not they can point you in the right direction. Also speak to the MSA trust. They may be able to advise.

[Monkeyfeet1 in reply to Hidden]

I don’t think it warrants a complaint…

[Hidden in reply to Monkeyfeet1]

Fair enough. PALS generally shakes things up a bit and gets some action. Our GP recommend we did that when we were being disregarded over getting a Parkinsons nurse. You can always request a different neurologist and see if they'll allow that.

[Monkeyfeet1 in reply to Hidden]

Thank you 🙏🏼 I will have a think about PALS. X

[chester2107]

yes i would try and see a different neurologist, my dad had problems with his eyesight , double vision and also his words woukd sound slurred because of his speech

xx

[Monkeyfeet1 in reply to chester2107]

my speech is slurred too x

[chester2107 in reply to Monkeyfeet1]

he was offered speech therapy but refused it !

[Helenhooter]

Hi

I'm on my third neurologist and the first one reckoned that there was nothing wrong. It has been 5 years and still no firm diagnosis. Keep hanging in there

Cheers

H

[Monkeyfeet1 in reply to Helenhooter]

I’ve been misdiagnosed too. Too many times. She misdiagnosed me.

[Niknak74]

Hi

So sorry your experiencing this issue. My husband had MSA and we didn't feel the initial neurologist listened to him or try to understand what was happening (she was so matter of fact it was callous and very upsetting to see her treat a person with such disregard, considering the reality of what he was facing) and she did record a significant amount of things incorrectly due to not listening after the appointments which worried us ref diagnosis and supporting Paul's health.

We decided the little energy we had was needed to support symptoms and create as much of a decent lifestyle as possible not spent battling the NHS. We spoke to our GP and requested a new neurologist citing kindly the reasons why, but being very honest about it, probably hoping she would take it on board but I doubt that very much.

He fully supported the change and we did gain another consultant who was kind and Paul felt listened to him.

Good luck and don't be afraid to ask for the support you need. This is your journey and its okay to ask for what you need to help it move along in the way you see fit.

Nic x

[Monkeyfeet1 in reply to Niknak74]

Thank you 🙏🏼 At least she actually spoke to me this time! ( She usually converses with my husband). I think that was only because she was being observed by a junior doctor- who my husband said was crying).

[1burtonst]

Hi We are just going through the Same thing .I know more than my husbands neurolagist. He is rude does not listen .I think a lot of the Dr don't want to understand the symptoms and just try fobbing you off ,good luck we need it X

Janet X

[Monkeyfeet1 in reply to 1burtonst]

This is what I feel! Brownie points for diagnosing but doesn’t actually want to help. X

[chester2107]

speak to msa trust , if you haven’t already as they can really help you , if you haven’t already

[J0nstandard]

Sadly, I can report a similar lack of care and support during my Sister’s journey towards diagnosis. I think that once a neurologist hits the brick wall of MSA - that is it’s an incurable and irreversible disease - then they switch off.

We also tracked down a consultant at Sheffield Hallam Hospital who is expert in Gluten Ataxia in our attempts to find the cause and possible treatment - coeliac disease being my own condition and potentially an hereditary family condition that can cause ataxia when untreated. This also drew a blank although the consultant and the specialist nurses there were absolutely wonderful and very appropriately caring/sympathetic.

In short I agree with Niknak74 - spend the energy on seeking symptom relief and palliative care. There seems to be no magic pill to either slow down or prevent the advancement of MSA. For now.

[Monkeyfeet1 in reply to J0nstandard]

Thank you for your reply. I’m sorry that so many of us experience this.

[Hidden]

Was she a registrar or the consultant? I would have a word with your parkinson team and explain how . They will sit in with you and support you in your next appointment. Xxx

[Monkeyfeet1]

she’s the lead consultant!

[Hidden in reply to Monkeyfeet1]

Then I would definitely ask your parkinson team for advice and support in your next appointment. When my husband had a similar experience, our lovely nurse listened and sat in on his next visit. I think the problem is the professional distance they have that allows them to deal with difficult health issues. However, that doesn't help you to understand what you are going through. As for talking to a partner when you the patient are sat right there, i personal used to say ask my husband. He's right there.

Big hugs and don't be put off, there is help to be had, you just have to ask. Sharon xx

[Monkeyfeet1 in reply to Hidden]

Thank you 🙏🏼