FND & Relapses with Prof Mark Edwards

[@abeautifulmindispoetrydefi5323]

The biggest problem with FND is that it real terms we are all very much in the dark about "It" and rightly so, because its relatively new. Any thing new, has to take time to bed down, and this "bedding down" time can literally take decades upon decades, which on the surface of it isn't inspiring or helpful but not everything that life throws at us is. So initially the best starting place is for the sufferer is to acknowledge that this is what you have, and there is currently very little known about it, and while that is the case, it's not to say that you are the only one suffering this alone, as you're not, and this response shows that. Denial at the beginning is the biggest set back as with anything that we get diagnosed with. So acknowledgement is the key to recovery here, it's the start of the recovery process. It's the positive that allows us to use that as a driving force to accept that we have to embrace this change, which none of us are good at if we're honest, but to looking at it positively rather than negatively. Acceptance is does not mean defeat nor giving up, what it means is that you recognise this new challenge that you have been faced with and you look at how you can best manage and work with this condition. It's a mindset that one needs to develop here, and when you that you can make real progress. Let me explain progress, because for many it's a bit like learning patience, and the joke God teach me patience, but I want it now! Progress with FND can be incredibly slow, but there's nothing wrong with that, after all the body and mind are trying to reconnect and that reconnect doesn't mean that it's broke in terms of forever but it could mean that it takes longer than what our own expectations had in mind. The problem with expectations is that we as humans tend to be very unrealistic and combined with impatience it can work against all that we're trying to do. For me my starting place was to surrender to God and ask for help, which will not be everyone else's experience but that was personal to me. Having said that, I'm still alive, and very much better than I was. Praise God!

[@Julia78309]

This is brilliant.. thankyou for being relatable and being on the patients side..way to many doctor's are not good t this. Ç

[@denisebraisby4251]

Regarding vaccines. The covid vaccine left me with FND I've had 2 relapses in 2 years

[@MaryAldridge-xl8sr]

I lost my job about 2 years ago now due to me having sezuires and was having about 3 or 4 a month my employers were very good with me but due to my condition getting worse they had to let me go I also had occupational help

[@HarrietHandley77]

This is excellent!! So many questions I have were answered. 👏🏼👏🏼👏🏼

[@kristenwhite2701]

All kind of vague "symptoms",but that's the nature of it. Couldn't make it through another of these. I think any medical symptom can be looked at as FND.

[@brucemjson]

I'm slowly losing my strength and mobility, I have permanent tingling in my legs and all scans look normal. Clinical findings are ataxia and now FND is on the cards 😢

[@ravellabrincat2125]

Hi ..I am not sure I was told I have this functional neurological symptoms, but I dont know if it's right as the pain .was over looked is there any one I can talk to please

[@MaryAldridge-xl8sr]

I have good family support and friends and also a chat group my doctors are hopless and they are the ones that make me feel awful they speak down to me I have been to see doctor Philips at addembrooks and she was amazing I don't get medication for mine and mine is now worse I now have to walk with crutches I shake I twitch I have stroke like symptoms and I have non epaltic seziures and I've also had my condition for about 11 years now and a lot of what you are saying makes sens

[@mitch201211]

From when you told me I have fnd , ive not in proved much , both lags an feet Hurt , my right has a split thermal artery, left I don't know, but the home rehabilitation you asked to see me signed me of , as they thought it to dangerous, I need help please I still don't know what I need to do ive been like this for 6 years,

[@traceychalkley9946]

May I ask about HRT. My FND symptoms started after surgery to remove my ovaries. Because it was surgical menopause I'm now on HRT but I have got worse and worse

[@MartinNeep]

Is it possible for FND to cause dysesthesia? I have various dysesthesias and girdling around my torso. MRI shows no demyelination in brain or spine, but I’ve been suffering for 3 years.

[@traceychalkley9946]

Thank you for this. Ive just been diagnosed FND by a neurologist after he said MRI brain and spine scan showed it isnt MS. My symptoms started after pelvic surgery. 2 years ago. At first my gp thought it was a TIA and referred me to the urgent clinic . I am a long term migraine with aura sufferer the TIA consultant ruled out stroke but mentioned hemoplagic migraine but the neurologist said it's FND. I'm confused and the neuro discharged me with amytriptaline.

[@bxstar5276]

this sounds rough. what country are you in?

[@denisebraisby4251]

Just watched this find video on KZbin. How are you? I'm in a similar situation. Been told it's possible fnd and not ms. Awaiting an MRI. Were you correctly diagnosed?

[@dianehaydock2144]

I have a question I suffer with fnd my neurologist only did a brain scan never scanned my spine I was suffering with shaking pins and needles memory problems major fatigue and daily headaches eye flicking weak and painful limbs mood was low I got OCD skin picking and thought I was going crazy I tried a few antidepressants that made my full body tremor I was freaking out I scrapped meds that caused that and tried a few more not agree with me latest one was the worse Prozac set off nerve pain down my face in to my jaw and teeth I was only on 10mg why are these meds bringing out more horrible symptoms that I never had before with fnd I don't kno if that nerve pain now will settle or it'l just be another issue but I don't understand these meds r suppose to help not make things worse ??

[@MaryAldridge-xl8sr]

I always have to go to the toilet for a wee after I have a sezuire always

[@MaryAldridge-xl8sr]

I can sometimes tell when I am going to have a relapse I nit always but if I get tired I take ny self off to bed and some tines it prevents it from happing but mist if the time I have a sezuire

[@tammyivey4681]

Ive been in wheelchair bond almost 4years November i have spc in as well and legens in my brain but drs call it fnd whats your thoughts thankyou

[@ajh8156]

Lesions are a sign of either brain damage or MS. FND is not caused by structural damage (i.e. lesions), rather it is caused by a fault in the way the brain and nevervous system work. I would recommend getting a second opinion from another neurologist as they may have overlooked the lesions. Whilst FND is a completely valid diagnosis, I do feel that some people are getting misdisagnosed with it because it's easier to diagnose them with an untreatable condition than a treatable one. Hot take, I know.

[@emmahammond4338]

is this still a channel?

[@MaryAldridge-xl8sr]

But most of the time that's meant to say