Are neuropsychiatrists medically qualified???

[Grumpyoldmaid99]

Hello, just joined after being given the same info by a neuropsychiatrist or look at the website and do crosswords. I'm at a loss.

[Hidden]

I’m at a loss for you - I’ve just escaped the clutches of a neurologist and have similar symptoms to those you describe only I am not wheelchairbound. Have you had MRIs done of your spine, lumbar puncture or antibodies taken for connective tissue diseases at all?

If it were me this is where I’d start somehow. I can’t say if neuro psychiatrists are medically qualified but I do know that neurologists aren’t usually trained in psychiatry or psychology or rheumatology or immunology. And the last two might be of use given that systemic/ collagen vascular diseases such as Vasculitis, Lupus and Sjögren’s can all cause autonomic damage and also affect the peripheral and central nervous system. You may have wound up in the wrong part of town medically - as I did myself for a while.

[Grumpyoldmaid99 in reply to Hidden]

Hello, no I was sent to neurology in 2016 and they said MS, only the bloods didn't support that as my protein levels weren't high enough. I had a brain scan which showed lesions. IV had an MRI on my neck following injury 2013 showing cervical stenosis (psychosomatic??). The recent trip to neuropsychiatry ended with being advised to do crosswords to improve cognitive function.

[Hidden in reply to Grumpyoldmaid99]

Hmm I think if there’s a next time I’d hit them hard with a rolled up copy of the paper containing the crossword! Unbelievable - some of the posts here describe medical idiocy that is simply soul destroying - yours included.

The reason I suggest that you may have a disease that mimics MS is because of the lesions and stenosis. I have both too and my disease is Sjögren’s with overlapping connective tissue disease. The type that presents most like MS is the type that often doesn’t show in the blood. The rheumatic diseases I’ve described above are often misdiagnosed as MS.

Here’s a link in case it’s useful: hopkinssjogrens.org/disease...

[Grumpyoldmaid99 in reply to Hidden]

Hello again. Wow you have an actual diagnosis!! Thank you for this link. Interestingly I've just had a skin biopsy to try to effect a diagnosis , however this was "inconclusive". However this is definitely something to pursue. I feel your pain.

[Grumpyoldmaid99 in reply to Grumpyoldmaid99]

Apologies for overuse of "however" ; word of the moment.

[Hidden in reply to Grumpyoldmaid99]

I hadn’t noticed but “however” is a pretty reasonable repetition I feel - I’d be repeating much worse!! 🤗

[Grumpyoldmaid99 in reply to Hidden]

Someone has posted a comment stating an fnd diagnosis is a violation of human rights. I share this sentiment. It cannot be healthy being immersed into a scenario which creates total resentment of the medical profession.

[Hidden in reply to Grumpyoldmaid99]

A skin biopsy wouldn’t show Sjögren’s or Lupus or others unless it was from a very specific rash (Lupus and Vasculitis or Psoriasis) or punch biopsies for small fibre neuropathy. The only specific diagnostic test for seronegative Sjögren’s is a lip biopsy where about 4-6 tiny salivary glands are removed from inside of the lower lip and analysed for lymphocyte infiltration.

Here in Scotland it’s a double whammy because we can no longer access the top specialists in rare diseases due to our devolved and bankrupt area health boards. This makes us sitting ducks for the neurologists who have dreamt up this disorder. If you have an undiagnosed rare disease then the only way to access appropriate expertise is often to travel to London or surrounding centres of excellence.

I was diagnosed last year with “FND” overlay. This significantly slowed down other investigations and treatment for my overlapping connective tissue disease/ CTD - which points to limited cutaneous systemic Scleroderma - LCSS. I don’t altogether blame my neurologist for her presumption of F word overlay because I was sold short/ gaslit badly by the CTD clinic doctor - who is a jumped up GP playing consultant due to shortage of consultants. But between him and my neurologist a game of whispers came about with 2+2 =7 (FND) rather than the true picture emerging. So it was “just Sjögren’s” plus “chronic illness/ FND” and a referral to neuro psychology for me. And the prospect of being discharged to a hopeless GP practice.

So under the circs I travelled all the way to Swindon and privately sought the opinion of one of the few experts Rheumatologists in Sjögren’s. She is also president of the British Society of Rheumatologists. She reviewed all my test results and matched them with my symptoms and confirmed autoimmune diseases and was clearly exasperated by the “just Sjögren’s with chronic illness/ FND overlay” without actually saying so. She wrote a brilliant letter to my GP on my behalf saying I need to get back on treatment and recommending her only Scottish counterpart. I gave copies to my dermatologist and neurologist. I was told I couldn’t get an out of area referral to see her Glasgow based Scottish counterpart due to my East Scotland location.

My dermatology professor was furious for me and referred me for a second rheumatology opinion, the neurologist has backed off although I have an open ticket. I will have second rheum opinion in January but the CTD professor has already seen me and said I was in right part of town after all being at CTD clinic. Neurology input is now viewed as secondary and my main risk is now understood as vascular.

My neurologist is a nice woman who knows my views on the F word and on the perpetrators. Nevertheless she was planning to refer me to Professor Jon Stone for a second opinion. I’d never have agreed to this but now I have this letter and a equally fierce one from my dermatology professor (skin cancer). So I have been able to escape from “the wrong part of town” as I think of it.

I’m not lucky because I now have lymphedema, possibly Lymphoma and likely pulmonary hypertension plus high risk of invasive squamous cell carcinoma. I also have had very high inflammatory markers ever since my symptoms began - which I’m able to point out are hardly “functional”. But I do know now that most neurologists, including mine, haven’t a clue about systemic diseases.

I’m lucky that I am tenacious enough to do my research and knew how to seek expertise on my signs and symptoms. I stay here now really just to encourage others to do the same - whatever it takes. You have enough signs to match up to more than enough awful symptoms. But it’s quite possible that you may be looking for answers in the wrong part of town ie neurology. Many illnesses present neurologically but it doesn’t mean that the inflammation is neurological. It could be systemic like mine.

[Grumpyoldmaid99 in reply to Hidden]

Wow you really have done your research. I'm not far from Swindon but ironically planning to return to Scotland. May now have to rethink that lol. My sister in Scotland has similar symptoms and been through the same circus, now diagnosed with fnd and being referred to someone in Aberdeen. All doctors from gps up I've seen over the years have dismissed any hereditary link. However I'm not prepared to let that go, as our mother (also in Scotland) has systemic lupus. I'd welcome your thoughts on that as from what I've read in your link that is another pointer to sjorgens.

[Hidden in reply to Grumpyoldmaid99]

Absolutely re Lupus. I can’t advise on what you should do re returning to Scotland of course. But I’d honestly say that your mum’s lupus is a real pointer to systemic autoimmune diseases. If you can get a full battery of blood tests done, including full autoimmune panel - then it may well be worth going to see Dr Liz Price in Swindon and saying that your mum has Lupus. The great thing about her is that she thinks outside of the box. If your GP refuses to refer you on the NHS then she isn’t expensive to see privately compared to doctors at the London Lupus Centre or others. She does it for the love of her work rather than for the money. She told me she’s had quite a few patients misdiagnosed with MS.

Maybe avoid returning to Scotland until you have more diagnostic clarity? Particularly avoid Edinburgh. Best of luck and let us know how you get on. 🤞🏻🤞🏻🤞🏻

[Grumpyoldmaid99 in reply to Hidden]

Haha thank you. I've actually had the most success in this journey with a neuro doc in Edinburgh who did the nerve mapping. Without that I would be completely dismissed by medical people moreso than I have. I will continue to press the point of family history despite doctors. Many thanks for your help and advice, and good luck to you too.

[Hidden in reply to Grumpyoldmaid99]

That is an irony because most of the theories and FND research originates from Edinburgh - home of Jon Stone!

It’s so important to hold on tight to all the biomedical evidence we have acquired along the way. Ironically the F word was first applied to my symptoms when I was under a neurologist in Aberdeen. I had stroke-like symptoms following a year of pneumonia, pancreatitis and sepsis. It was explained to me that the trauma of these (each misdiagnosed initially as more mundane stuff) had caused my brain/ fuse box par excellence to partially close down due to a power surge of pain and trauma. This sort of made sense to me until I later discovered, once I’d relocated, that it was a reaction to Tramadol. My left side has been weakened by years of dental root problems affecting my trigeminal nerve so any neuro drug side effects tend to target my left side. So why can’t neurologists work this stuff out rather than plumping immediately for the F word about everything and anything they don’t understand?

I have spelt this out to my neurologist in no uncertain terms and she has backed down now thankfully. Tramadol is listed as causing me stroke like side effects and I’ve pointed out that many other pain drugs have a similar effect on me. She tried to explain that she wouldn’t have been influenced by reading the F word on my first neurologist’s notes - but I pointed out to her in reply that she jolly well would have because we are all robots these days and her software would have misled her hardware!!

I’ve found it really helps to throw their own doctor-patient lingo and points of reference back at them! It’s a tricky thing working out which doctors have hardware and software and which ones are purely organic you know?!! 🥴😉😏😉

[Hidden in reply to Grumpyoldmaid99]

That is a great irony because most of the theories and FND research originates from Edinburgh - home of Jon Stone!

It’s so important to hold on tight to all the biomedical evidence we have acquired along the way. It’s great that you have worked it out and continue to flag up your own hard evidence. This is what has finally helped me climb out of the “functional” abyss.

Ironically the F word was first applied to my symptoms when I was under a neurologist in Aberdeen. I had stroke-like symptoms following a year of pneumonia, pancreatitis and sepsis. It was explained to me that the trauma of these (each misdiagnosed initially as more mundane stuff) had caused my brain/ fuse box par excellence to partially close down due to a power surge of pain and trauma.

This suggestion sort of made sense to me until I later discovered, once I’d relocated, that it was actually just a reaction to Tramadol. My left side has been weakened by years of dental root problems affecting my trigeminal nerve so any neuro drug side effects tend to target my left side. So why can’t neurologists work this stuff out for themselves rather than plumping immediately for the F word about everything and anything they don’t understand????

I have spelt this out to my neurologist in no uncertain terms and she has backed down now thankfully. Tramadol is at last listed as causing me stroke like side effects and I’ve pointed out that many other pain drugs have a similar effect on me. She tried to explain that she wouldn’t have been influenced by reading the F word on my first neurologist’s notes. But I pointed out to her in reply that she jolly well would have because we are all robots these days and her software would have misled her hardware!!

And watch out for manoeuvre tests they use called tremor entrainment and Hoover’s and another old favourite called Waddell’s. These tests have now been dragged out of obscurity to reinforce the newer Stone Age diagnosis and are used to confirm “FND” - or if they don’t find them then you may be malingering to get benefits or have Munchausen’s 🤷🏼‍♀️😳🥵

I’ve found it really helps to throw their own doctor-patient lingo and points of reference back at them! It’s a tricky thing working out which doctors have hardware and software and which ones are purely organic you know. The bag of tricks is still frequently used on me so I just keep reminding these doctors and physios that the F word from positive hoovers sign wouldn’t explain my very high inflammatory markers nor my paired oligloconal bands (lumbar puncture 4 years ago) where drug reactions and high systemic inflammation almost certainly would 🥴😉😏😉

[Grumpyoldmaid99 in reply to Hidden]

Ha funny thing is the neuropsychiatrist I saw did the Hoover's test and reaffirmed fnd. Unfortunately she had thrown me at the start of the consultation so I didn't react until she said she would write a report to my GP stating I could be "cured" thru talking therapy, physio and crosswords. I then put her straight on the impact that would have on my benefits and care package. From her reaction , she'd never considered that previously. Hmph. However I have wondered if fnd is a Scottish thing? A former relative-in-law was diagnosed with motor neurone disease a few yrs back, after years of being robbed off, and it was a Scandinavian strain of the disease (Scottish parent) hence the difficulty getting a diagnosis. Obviously didn't present in typical firm initially. She has since sadly passed away, but I am wondering if there's a genetic base to these sets of symptoms which is being overlooked/ignored. Sorry, getting carried away now 😁

[Hidden in reply to Grumpyoldmaid99]

I don’t know tbh - I do know that the family of autoimmune diseases including Sjögren’s, RA, Lupus, Scleroderma and Vasculitis often do run in families. In my case I’m fairly certain that my late mum had Ehlers Danlos Syndrome/ EDS and that I have it too. But getting any doctor to confirm this now that I’m 56 with some arthritis seems to be impossible. So I think the genetic thing is very interesting but if I were you I’d avoid any doctor who subscribes to “functional” and try to find one who doesn’t. They definitely exist because a friend has an excellent neurologist in the south west of England.

And there are good and bad in every specialism so I now research all doctors I’m to see prior to seeing them so I’m a bit ahead!

The key is to research, research, research. I’m getting there slowly but surely but you just wouldn’t believe some of the guff I’ve had to endure along the way! Well..sadly you probably would but anyway please keep away from crosswords and hoovers and look out for the real detectives who wouldn’t use the F word for love nor money!

[Grumpyoldmaid99 in reply to Hidden]

Oh good grief, your history almost mirrors mine. How bizarre. Who is the south-west consultant out of interest? I've just been referred to the Rosa burden inst. Bristol. Forewarned is forearmed as they say.

[Hidden in reply to Grumpyoldmaid99]

Hmmm I don’t know their name but I’m fairly sure that this decent neuro isn’t at the Rosa Burden - where I believe there are signed up “FND” proponents of the gaslighter’s charter 😡🤯😜

[210272 in reply to Grumpyoldmaid99]

Ah, the burden centre, as I refer to it. Re 'FND' - according to the NHS site they 'challenge' patients. If you go (I'd body swerve it if I was you) you could challenge them to tell you what 'functional' means, having googled "the function of 'functional'" so you are fully prepared. It was at the burden centre that I picked up the 'functional' label which set me back a great deal and the underhand way it was done gave me PTSD. To get rid of this label I had to get re-diagnosed with the rare neuro condition I have, but it was a fight to make that happen and cost both me and the NHS a lot.

Because 'functional' is not a dx of exclusion, it is routinely over and mis diagnosed. Stone is aware of this and apparently discussed it at a meeting hosted by the Royal College of Physicians of Edinburgh so it might be worth contacting them to ask what strategy they are adopting to ensure that this dx is not made by confirmation bias or on the basis of normal test results alone. I know you've had the Hoover's test and I also know this has been used to 'prove' a 'functional' diagnosis in someone who had no weakness in that area, so the test was un-necessary.

Meanwhile I live in Bristol so if you go to the burden centre and I'm in town at the time, I'd be happy to come with you so they can't gaslight you into thinking you have a 'conversion disorder' or 'hysteria' or any of these other diagnoses that are all in their heads.

Oh and yes, neuro-psychiatrists are trained but are also 'self-made' - IE they cobble together various training modules and - voila - there they are.

[Grumpyoldmaid99 in reply to 210272]

Thank you that's very kind. I have to admit to my floundering in a sea of misinterpretation, miscommunication and mis-diagnoses. The last neurologist I saw (2018) actually looked at my notes, said I'd been diagnosed with fnd 2016 by his colleague (at a different hospital) so why was i here. Shocking. All this time my condition continues to deteriorate. Unacceptable in this day and age in my view.

[210272 in reply to Grumpyoldmaid99]

Can't 'like' that but can empathise. How come you didn't know about that dx? Did you not get a letter from your neuro's colleague who diagnosed you? They are meant to copy us in so we know what they are saying and can question the dx if necessary. Not that that is easy since Stone advises doctors to say 'I believe you, why don't you believe me?' if someone has the temerity and tenacity to question the 'functional' dx. More medical gaslighting we don't need and no wonder you are floundering, especially since a lot of the misinterpretation of 'functional' is deliberate.

All totally unacceptable and I would hope your GP would agree. Problem is that some of them get taught when to diagnose 'medically unexplained symptoms' (one of the many meanings of 'functional') so if you have one that's been trained in the dark arts, they may not be much help. Hmmm - could it be time to get your M.P. involved in your case? I've known drs come up with 4 differential diagnoses on the spot when various friends have done this. These drs also made urgent referrals to narrow them down and get a viable treatment plan on the table, using the shared care model so no further miscommunication can happen. Shared care isn't perfect, but it's a whole lot better than being passed from pillar to post and subjected to the gaslighting psychobabble merchants.

[Grumpyoldmaid99 in reply to 210272]

To clarify, I was aware of the original diagnosis but had asked to be referred back to neurology as my condition had deteriorated considerably and to out it bluntly , I wanted to know what was happening. Prognosis rather than diagnosis. Still no further forward. But I greatly appreciate all constructive input. I think MP is a positive step. I do think it's a case of knocking on as many doors as possible until one opens!

[Grumpyoldmaid99 in reply to Hidden]

But I'm really struggling to comprehend how your doctor's have been so obtusevegen presented with actual physical symptoms which I'm guessing have caused you not inconsiderable distress

[Hidden in reply to Grumpyoldmaid99]

Yep - it’s caused me as much distress to be fobbed off with this F-overlay as my horrible systemic diseases have caused me. I’m now resolutely of the mindset that there is no such thing as “functional” and everything about the mind and body is organic.

The attempts to pick out biomedical from psychological actually causes many of us serious and terrible distress because, fundamentally, we know that mind and body are one.

Autoimmune diseases and most other illnesses are directly worsened by stress. So if we see a doctor for review and they tell us that (“we do believe you” ) and know we have a confirmed underlying disease - but it’s presently inactive therefore out new or flaring symptoms are psychosomatic - this just stresses us out even more. They tell us we should be glad because “FND” can be cured. Then when we aren’t cured we are made to feel WE have failed by not fully believing in “FND” as a premise. It’s like a cult. In my case the F symptoms couldn’t be cured by physio or CBT because they aren’t part of a conversion disorder - they belong to diseases that are systemic and very active.

The way I see it most people are guided by instincts - fight or flight responses, knowing when we are hungry, knowing when we are sick, scared, angry, knowing when the cause is psychological or when it’s physical, knowing how to differentiate for the most part.

But when the F word gets thrown in by a medical professional our instincts often become skewed. We are gaslit into no longer knowing whether to trust our doctors or trust ourselves - especially if the two don’t match up.

Gaslighting is the only term I can find to describe this. It’s insidious and I try to resist it with all my might and main. X

[Grumpyoldmaid99 in reply to Hidden]

Good for you and I totally agree with your organic sentiment. I've recently seen articles regarding 2 separate cases of women with breast cancer where stress was the trigger. No one would ever say cancer was psychosomatic, so why treat neurological diseases that way? I always believed science to be about being open to possibilities. Not shutting them down with a moronic blanket term. Ooh I get so mad and it's not good for me!

[Hidden in reply to Grumpyoldmaid99]

Ach me too - I fizz, rattle, snarl and cuss!

[Grumpyoldmaid99 in reply to Hidden]

Well I hope you manage a decent night's sleep. Its been most enjoyable and informative exchanging MSG's with you 😘

[Hidden in reply to Grumpyoldmaid99]

Ditto - although getting you correctly diagnosed and out of your wheelchair is my ultimate mission! X

[Grumpyoldmaid99 in reply to Hidden]

PS thank you for your reply. I'd previously been referred to neurosurgery with a view to inserting plates to relieve pressure on nerves, but this was later withdrawn due to my pain levels. A senior registrar stated at that time there was evidence of neurological disease on the MRI but that my GP would follow that up. Obviously that didn't happen hence here I now sit in said wheelchair.

[Hidden in reply to Grumpyoldmaid99]

Hell’s bells - well I just hope that you can find a sensible GP who will get you back on the right track. I’m so sorry you’ve had to contend with such bad medicine to date. If “FND” didn’t exist as a potential diagnosis then perhaps the initial investigations would have been correctly followed up. Grrrrr!

[Grumpyoldmaid99 in reply to Hidden]

I completely agree with you. I feel fnd is a cop-out diagnosis which inhibits further investigation. Infuriating!

[DNE92 Moderator FND Hope UK]

Hi. Yes in the UK - you can go to the General Medical Council and search their public register to see your doctor's qualifications etc. Love your "name".

Lou

[Grumpyoldmaid99 in reply to DNE92]

Hello, sorry have been absent for a while. That's actually a good idea so thank you for that info....apparently they can opt to take unrelated modules which still enable them to qualify. The name is how I was feeling when I signed up. Lol