confused

[Newly]

Hi, am just hoping anyone here can answer a few questions about 'FND' .. I was diagnosed as having 25-30 T2 Brain lesions & small pituitary tumour on MRI scan in 2013. Apparently the tumour or the lesions aren't doing anything but are still having lots of symptoms that my Neuropyschologist says match my MRI scan for where the lesions are, however I have just been re-investigated at London and now a Dr there is suggesting a diagnosis of 'FND' and these symptoms are not neurological and have ignored my MRI, constant high white blood count & low platelet count. The Dr said a lot of my symptoms don't fit in with FND but in his terms 'for want of a better diagnosis - he'll say FND because of a positive Hoover sign' and suggests I spend a week with them having physio & CBT from a psychologist even though my psychologist has already said that CBT won't help me .. What I'm confused about is and hope you can help is .. how many ppl with 'FND' have brain lesions on MRI compared to a clear MRI scan (the dr won't answer that) and I never told the Dr I have weakness in my legs! I tried to explain to him that I have nerve damage in my right foot from an op 12yrs ago and that's why I walk funny as I have no sensation in part of my foot, but he wasn't interested as he says the Hoover sign is positive so that means it's 'FND' ..does anyone know if nerve damage can effect the Hoover sign? I am just worried now that because he was so quick to say 'FND' and not to consider the full picture that they will stop looking for answers now .. When I told the Dr this he said that this was typical 'FND' not accepting it as a diagnosis! and rarely is his diagnosis & the Hoover sign wrong! Is this just me in 'denial' as the Dr says or are Dr's now giving a quick diagnosis of 'FND' because they have no other explanation to give? .. Sorry for the long post but any advice would be welcomed as I'm not sure now whether to just put up with my symptoms and never see a dr again or carry on fighting for a diagnosis. Ironically my Neuropysch warned me about they giving me 'functional' diagnosis before I went to London. Thank you

[Danslatete]

That's the worst thing with fnd diagnosis. You go for second opinion, that is indicator of fnd. They can fit you into it with every way you turn.

Ask to see fnd specialist and get every bit of help they offer then when nothing changes they will have to accept its not.

Of pay for a private consultation and get a second unbiased opinion. But go to a different area or you'll end up seeing same doctor!

[Newly in reply to Danslatete]

Thanks for commenting, it was a FND specialist I saw besides quite a lot of other dr's while I was there for a week. He recommended a week stay with physio & CBT pyschology .. even though my Neuropyschologist report says I am not a candidate for CBT and he ignored her report. He also ignored my speech therapist diagnosis of dysarthia which the neuropysch agreed collaborated with her repirt .. it just seems to me that when a FND specialist is ignoring the reports off other health professionals & MRI scans, blood work etc and doesn't even listen to you then this is unprofessional, I have never said I have leg weakness! So obviously the Hoover sign was going to be positive! lol .. thankfully though before any decisions are made he has to submit his report to the Prof I'm under, so I suppose I will have to wait for his verdict

[Danslatete in reply to Newly]

I had twenty seven white spots, I had been in a nasty RTA.

I was desperate to get well. I wanted to be back to normal.

I have also had 2 spinal surgeries, 2 spinal epidurals for pain and inflammation in a different area and I ended up with a step in my neck from the RTA. I had visual problems too.

I came from a very dysfunctional family and I have a severely disabled brother.

I was seeing clinicians for brain injury, I was at fracture clinic, neuro ophthalmology clinic, neuro physcology, and neurology.

After being treated by all of these professionals for a year of two, I entered into the legal medical minefield that goes along with an injury claim.

They had Independant reports done by all of the above specialities, I travelled far and wide for the appointments. Every independent specialist mirrored my own until I got to the neurologist.

He asked a lot more questions about my childhood, my family life, my home/work balance, any stress I was under. Ha went through my entire medical records from birth, highlighting my difficulty with UTI and nephritis. Highlighting how many different GP I had seen etc. ( I was in the RAF so had travelled and moved extensively).

He decided I had FND. At first I was horrified that they thought I would be faking something for years. Losing my home, career and many friends along the way. Then I thought I could get better, I thought there was a chance for me to be normal, the old me. I demanded appointments with psychologists ASAP from my GP. I also told him I could only see him in future as it is not good to see lots of doctors. I told my BI specialist I was seeing someone who could make me well again and thanks for everything but bye! Luckily he ignored me.

I didn't get better. I thought I'd failed at doing the therapy, it left me feeling lost, desperate and very very angry.

When I got to see the medico legal reports at the pre court hearing, I saw all of those Independant specialist had read the neuro one and then changed their opinion. I was terrified all over again.

All of this I believe set back my recovery and reintegration into society by a good few years.

I'm still living with the effects of the BI. I still have double vision, photophobia and very poor night vision. I still have difficulty judging distance ,depth and speed. I'm still having problems with my bladder and bowel due to nerve damage from the spine. I still have poor grip and power on my left side. 11 years.

I am working I am a mum I am an asst cub leader. I am a wife, I am a carer I am a student. I am still brain injured. If I have a functional overlay I can't say where that starts and the injury ends.

I got scared of seeing doctors, I virtually stopped everything except pain clinic. I was worried that they would think I was looking for an illness etc. I got very sick. Twice. Both times I was told I had to keep myself well. I had to take my health seriously, doing leave it so long to get an appointment next time.

Never ever do what I did. Your health is very important. I'm now working with my GP practice and trying to keep myself wel.

[Newly in reply to Danslatete]

Thank you so much for taking the time to write your story Danslette. I have done exactly the same as you hun. Thought, forget Dr's and I will 'fix myself' and like yourself have ended up in hospital. I'm a person who before my eye sight dramatically changed had never been to my GP for 10 yrs, it even took me then several months to visit him. As my neuropysch says she's even surprised that I stay so active & positive and although there are things I can't do I'm always focusing on what I can do & I still go out with family/friends etc. even though I have dysarthia. I run my own business, have 4 kids, 3 dogs & 2 horses and in my spare time I'm a paranormal investigator with my own group and a member of the SPR and we also find new locations for the MH team, etc .. but apparently according to the FND specialist 'I'm too active' .. I just get the impression that I'm damned if I do and damned if I don't! ... but like yourself .. If an FND specialist has 'hard evidence' from other health professional should this be ignored so you 'fit in' as FND and to be honest FND lists every possible symptom known to the medical field as a FND symptom so there's nothing particularly anything unique to FND .. and therefore in my opinion if your not getting the right treatment for the 'hard evidence' then it's hard to stay well.

[malalatete]

Depends whether your neuro understands FND or not! Read up about the work of Dr Mark Edwards at the Naional Hospital for Neurology and Neurosurgery. He offers a week of physio (I have been through this myself) and his team are hèlpful. Any CBT syle advice given was sensible, although I had heard much of it before on my rehab course, ànd the physio definitely made some improvement -went from walking 19 steps per minute to 26 😊. His understanding of FND is not based on the psychological - he said to me the only examples he could think of like that were around major psych trauma such as resulted in shellshock - but that brain systems that we as yet do not understand or are as yet unable to scan for are disrupted by some other kind of trauma, which in my case he suspected was an unusually severe and protracted migraine.

I still dont walk that well, all my other symptoms are still here, but I have a better understanding of how things came to be.

[Newly in reply to malalatete]

Thank you for your reply. Actually that was the person I saw .. Yes I walk funny because of nerve damage to my right foot and I should put a special insole in my shoe to help & wear an ankle brace if I'm doing a lot of walking.. but hey! I'm a woman! lol .. have had physio before, after the operation to correct my foot 12yrs ago and have all the exercise etc that I do most days and I walk lots as I live in the countryside and have 3 large dogs to exercise, plus have horses so walking or weakness in my legs in not my issue and never has been, so to me .. When he was talking about the Hoover sign as a definite positive I have FND .. My husband and I were very much of the opinion 'what' of course it was positive! lol .. Tbh I could laughed as clearly someone needed to listen before making such a judgment .. Obviously it was probably my fault .. If I worn my insole & ankle brace then he wouldn't of picked up on walking I suppose... but to continue ignoring the MRI scan, blood work, speech therapist & neuropysch reports we thought was unprofessional .. I actually suspect that there isn't many people he doesn't diagnosis as FND and the impression we got was that he was trying to convince himself than us! and numerous times he replied 'ohh that doesn't fit with FND but for want of a better diagnosis he'd have to say FND' .. I suppose on the upside he is a champion of FND & awareness but I don't think that means he should ignore 'hard evidence' in front of him and other health professionals reports as I do think this can be dangerous. I'm glad he & his team have helped you with your walking and you are managing your symptoms and I hope you continue to improve with time but for me .. As I put it .. I can't go to an AA meeting and admit I have a drinking problem when I have no history of alcohism and I've told the Dr that I don't drink and he replies that the first step is admiting that I drink lol

[malalatete]

Oh I am sorry that was your experience, as I said I found him and his team's week long programme v helpful. He is generally considered to be alongside Jon Stone of Edinburgh in his approach to what other neuros tend to dismiss as conversion disorder. Doesnt claim to have all the answers either which is refreshing.

As I understand it, and I don't know whether you have come across this, it is possible to have lesions and not have obviously 'structural' problems or symptoms - migraineurs have been found to have white matter lesions, for example, so it may be there is no explanation for your results, it is just a scan abnormality. Might be worth looking into.

Did your neuropsychologist specialise in neurology or radiology? That is interesting. Mine wouldn't attempt to interpret scan results as it isn't her field. Helpful to have both specialisms in the one if you can get it!

It is so annoying though to have something show up on a scan and be suffering neuro symptoms but be told they are not connected...I have this with my aneurysm and regardless what they tell me I can't get rid of a sneaking suspicion that it is all connected, it is just really complicated and they don't understand it yet. In the meantime, a bit like you, just keep putting my best foot forward.

Best of luck with your searching.

[Newly in reply to malalatete]

Thank you for your reply, yes I'm aware about things like Migraines causing lesions but that has been ruled out and I accept that these lesions might just be there and part of me .. What I struggle to accept is that when I've been really unwell and in hospital even my blood work is wrong and no one knows why, so they just correct it, rather than finding the cause & send me home.

My Neuropyschologist says my test results collaborate with the MRI pictures and it's impossible to falsify these tests so in her opinion these lesions are doing something that's causing some Neuro symptoms but it's up to the Neurologist to say exactly what. Have you seen a neuropyschologist for brain mapping to see if any of your Neuro symptoms match where the aneurysm is? this might be of interest for you to see if they match and if not it would also reassure you that they are not related and give you some reassurance, thank you so much for raising the point of Neurologist & radiologist .. I only have a Neurologist! but it has been suggested from another Dr that seeing a specialist in blood and going back to the Endocrinology dept before I see the Prof I'm under might give more answers than a neurologist, so who knows!

Definitely! Keep your best foot forward, keep smiling, stay positive and I hope that if you haven't already had brain mapping done then you explore this avenue as a possibility for your recovery.

[SuCouling]

I believe it is easier for a consultant to say FND than admit they have no idea. In this day and age the medical world like to blame everything on depression or something bad happened in your past.

I would love one of them to spend a day in our shoes and then see what the answer would be.

[Richella]

Hi, I also have extensive brain lesions (frontal lobe and cerebellum). Weakness all down left side, headaches, painful spasms etc. Both neurology teams that I'm under have said its a movement disorder and have apparently just dismissed these active brain lesions. Keep your chin up and do your own research. Only you know your symptoms. I find this is a great site..