A little politeness please?

[Goneautomatic14]

I was diagnosed about two and a half years ago. I saw a neuro for about 15 mins and i havent seen one since. I was convinced by the medical *professionals* that the FND was caused by PTSD (and that i was bat s*** crazy) and was told to get on with it.

I have personally organised counselling and CBT (37 weeks of it),pysio and occupational therapy support but my symptoms have become worse over time not better.

I asked my GP for help as i really dont know what to do next and he referred me back to the neuro.

So today i had the misfortune of meeting the rudest, condescending, arrogant (i could go on) doctor. My life has changed and i am unable to do my job which i am gutted about as i di live my job. However given the role i used to perform there is no chance of doingnit anymore and i am currently innthe process if medical retirement

The doctor did a speed neuro exam, suggested i was faking it, told me there was no point in seeing her and then blatantly told me that i didnt want to get better before i was medically retired. At that point i felt so demoralised and embarressed. My daughter (paramedic) jumped in at that point and challenged the doctor who was entirely apologetic.

I have done everything i can to fix this but yet again have been treated like a prize plum. She then told me to go to neurosymptoms.org as Dr Stone insists that i can recover from this. What the hell does she think ive been trying to do.

Someone missed out on sensitivity training or FND awareness day, no make that common decency and politeness day.

I feel worse than i did before i went.

Still she told me i had FND.......you dont say!

[Goneautomatic14]

Apologies for the spelling mistakes i was ranting so much my fingers couldnt keep up lol

[Lucy-15]

Sorry to hear about your ongoing struggle and think many on here Will understand your frustration as we have also banged our heads against brick Walls !

Becsuse a neuto is aware of FNd does not mean they know how to treat it or specialises in it.

Think I saw 4 Neurologists before I wax recommended to an fnd specialist Nerulogist ! If you live near London your GP can refer you to Prof Mark Edwards (now only works in NHS) at st Georges hospital Tooting or In Scotland think it's Dr Stone. Both specialise in FND

Hope this helps.....take care

[Goneautomatic14 in reply to Lucy-15]

Hi lucy

The thing is im not after another visit after this one. I will refuse to see another neuro until they sort their acts out. I am disheartened by the horror stories i read and cant believe there are only 2 knowledgable doctors in the whole of the UK who give a damn.

I have been left to get on with it and ive done an excellent job so far lol.

I went with an open mind to the hospital but can honestly say im not suprised by my treatment.

Smiles

Caroline

[Bfb65]

I sympathise with your problem as my husband was diagnosed with fnd and for years we have had the same problem in getting any neurologist to take his disability seriously. When we go in hospital now we tell them he has a neurological movement disorder and are awaiting a diagnosis, that way we get decent treatment. My husband has been psycho analysed for ptsd, stress depression etc and cleared of all, she says the fnd diagnosis is wrong and neurologists are now using this as an easy way out, she says fnd means frankly no diagnosis. Get yourself a good gp and don't give up, it's a fight but keep going.

[cathys20 in reply to Bfb65]

I could not agree more!!!!! Well said. It is a neurologic movement disorder and you need a good Dr. But where are they for you. My heart aches for those with still not medical support and Dr.s unwilling to try any kind of drug therapy. WE must join together as one voice. I am just not sure how. God Bless, and may this day for all be a blessed one considering all the adversity. cathy

[Wino84 in reply to Bfb65]

They say that your personality can also make fnd more likely by holding in feelings. Even as a child when anyone said what's wrong I tried to keep it to myself even if I was crying. I also remember my mom always discouraged crying and told me to be tough. So I guess the thing is that life could have been tough and he had to hold it in. I do say most people develop signs and symptoms of depression and anxiety just do to the constraints of the illness not bc they are crazy but their life has changed and you feel a lot of emotions including extreme guilt!

[Wino84]

I'm very sorry..I know how you feel as I have experienced something similar. Unfortunately she must be unfamiliar and uneducated for her to call you out was extremely rude! We care about you..at least you got a diagnosis. I am still fighting to get mine. A bunch of articles to educate mds insinuate that there are some making it up. I just don't see why anyone would do that but it does plant that seed in their head.

[Hidden]

The Rosa Burden Centre - Southmead Hospital, Bristol.

Inpatient and Outpatient clinic with the following all specially trained in FND:

Neurologists,

Psychotherapists,

Physiotherapists and

Occupational Therapists

(There might even be more tbh).

Took me years (and years) and a 120mile move to find the Rosa Burden Centre, but life improved the day of my first consultation x

I had knee surgery recently and the orthopaedic physio I saw had recently left her position at Rosa Burden, it was so refreshing to meet somebody knowledgable of the condition in a non-neuro related setting tbh.

Having the right care team helps exponentially, it really does xx

[3girlsmama in reply to Hidden]

Hi VeryBerry, I’ve recently been referred to the Rosa Burden Centre by my neuro at Southmead. Wondered if I might be able to message you to ask some questions about treatment there?

[andyglasgow2016]

I'd actually like to add I saw 2 neurologist who are good with FND

Dr Newman in Glasgow Royal who diagnosed me but wasn't too specialised in this area but did see me a while then referred me to a specialist who fights the NHS in my opinion to keep funding etc

Her name is dr Murray in Glasgow queen Elizabeth univiersity gospital (the old southern general) she's been fantastic and everyone I've met in the waiting room says how good she is too. She always runs late on appointments but that's because she sits and listens and asks questions. She's brilliant and a real asset.

I know it doesn't help if you have pants neurological doctors but just be encouraged there are more out there and hopefully if you can say where you live somebody may be able to point you where to go.

Stay strong folks

[angelite]

Oh Jeez. This sounds very similar to my recent neuro appointment. Made his mind up before I even walked in, up in my face telling me how 'functional' it all was and that there was no treatment for it. Quickest most basic exam ever. The favourite dumb question of ' Do you want to have a disease ? ' ! ! ! Openly hostile, asking angrily why I was walking like this, making it quite clear that I was a nuisance, timewaster, the usual website referral etc. Laughed at my previous symptoms ( of suspected brain infection 3 years ago ) to show how ridiculous I was. Right at the end, he said ' You had symptoms that got better after seeing the last neurologist, that's what you said. I was gobsmacked - I have never said anything of the sort to anyone - quite the opposite to my GP ! I simply hadn't troubled anyone for 2 1/2 years as my disability level had plateaued out, I had adapted around it and was told it could take years to improve. What kind of assumption was this ? ! I got up in HIS face and spoke very slowly ' No, I returned to work on reduced hours due to continued muscle symptoms and fatigue. Like I previously said, I've had one level for 2 1/2 years, now I have a lower level' ( after UTI, sepsis and a relapse ). Totally hadn't listened to a word I had said. He relented at the end and I am to get a neck/spine scan. Sorry, I totally went off on one of my own there !

I did consider asking ' Would you consider yourself a people person ?' lol !

I have decided there should be a collective noun for these people, ie. a 'flock' of birds, an 'ego' of consultants !

I would like to point out some interesting info on the often relied on to provide 'functional' evidence Hoover's sign, regarding false positives and it's occurrence in some organic illnesses.

jnnp.bmj.com/content/73/3/2...

I have found similar info on other sites. Not as cut and dried as you think, neurologists !

I feel your frustration ! I went to a private physiotherapist to get an assessment, as hostile GP's did not want to know about examination and I was only referred after they read her letter regarding neurological signs. It would seem that the 'functional' label entitles you to zero treatment and zero respect in the NHS. I am thinking of putting a complaint in about rude/hostile/demeaning attitudes - seems like we too often get used as verbal punch bags by many of these frustrated ' professionals'. Not our fault that we may have something that has not shown up on a scan. I do agree that sufficient testing is often not done, presumably due to financial constraint and this FND label is being used as a convenient way to offload patients and save money in some cases. I also feel that this happens in some cases where procedures/ protocol goes wrong and no one wants to admit responsibility for the resulting problems to patients.

I too have had to give up my cleaning job after relapse and additional disability this time. If I could afford it, I would definitely have gone private !

Take care, I'm sure we are all with you on this one ! Angela x

[0101 in reply to angelite]

Dear Angelite

Can I thank you (rather too late) for this post. Your collective noun should be made official!! I will look to see other updates from you but reading/typing is difficult at the moment. Hope you don't mind me saying, but I cannot quite believe how someone like you who writes so clearly, with intelligence and wit has been treated as you have.

...And it strikes me again that you with a cleaning job were presumably seen as lower in the pecking order by the neuro you saw. Having got on my hands and knees with gloves and bleach and in smart suit, in one senior job, to clean our staff loos, having persuaded access to the locked facilities cupboard after weeks of staff cleaning positions not being filled...my hat is raised to you!

I'm speechless (probably a good thing ;-))

p.s. and good one Goneautomatic14 's paramedic daughter for jumping in

x

[Silver_Flower]

Hi Goneautomatic14,

I found your post just now after having the similar experience with a neuro. I got a copy of the letter the neuro sent back to my GP, and it says that thyis some embellishment in my symptoms. This means that he thinks I’m making up my symptoms! I feel very frustrated and insulted. It was a private consultation, so I paid fair amount of fee. How could anyone want to make up symptoms by paying that amount of consultation fee!! I got a letter from the neuro for a review appointment as he ordered a blood test. I don’t think I’ll go back to him. I know the blood came back normal, so no point seeing his as he thinks I’m a fake, anyway. I feel very hurt and I wish I had not seen him at all.

I live in Dublin, Ireland. Does anybody know any neurologists who listen and willing to work with a patient who has a functional disorder around Dublin??