Greenbeens

[GrEeNbEeNs]

Hi to all the people on this website I'm curious to know how many people with FND don't believe that it's caused by trauma in your life or depression and anxiety. I would also like to know if anybody suffered from migraines for years before getting FND because I did and sometimes wonder if that has lead me to get FND

[Lady4]

I believe it could be and because its deep down in the subconsciousness its hard to channel into or predict. But, I also think many are misdiagnosed as I learn of lots more conditions I have never heard of before.

I was researching B12 deficiency earlier and came across ataxia and paraesthesia, some of these conditions need early diagnosis.

We shouldn't have to self diagnose to ask the right questions to receive proper medical support.

[GrEeNbEeNs in reply to Lady4]

Thanks for your reply it was very interesting looked in to ataxia similar symptoms to what i've got i'm starting to think that I've not got AND but to scared to go to the doctor because they just say that everything is down to FND and don't want to do other tests.Thanks again for your reply,take care.

[Lady4 in reply to GrEeNbEeNs]

If you think they have got it wrong challenge them, get a second opinion, its your life not theirs

[Van604]

Hi. I don't believe it has anything to do with trauma etc, at least for me. This was backed up by a psychologist I saw for nearly 2 years who finally told me my problem isn't psychological and that I should find a good neurologist. But in N America the doctors etc all believe the Freudian theory so people diagnosed with FND are seen to be "somatizing", so either crazy or faking. The way I've been treated in hospitals is truly appalling because of this. I had an episode with disturbed vision that an optometrist and a neurologist said was an aura, but it wasn't followed up. So I think there could be a link with migraine. BTW - the FND had a lecture from a migraine specialist at their last conference so they must be thinking that too .

[GrEeNbEeNs in reply to Van604]

Thanks very much for your feedback I'm not very good at replying due to poor concentration and trying to find the words your reply was helpful,sorry to hear that you havn't been treated very well in hospitals it's very frustrating because I don't think people realise how much people with FND suffer , it's also worrying when you get a new symptom and your just automatically told that it's another symptom of END without it being checked out.

[Lady4 in reply to Van604]

And migrane summit wrbsite has a lot of podcasts from specialists, worth checking out (first 4 were free to listen too).

[CrystalBeach1]

Hi, I’ve been diagnosed with FND and my neurologist said I didn’t have a mental component to mine. I guess the thinking now is not everyone does. Prior to the name change I had conversion disorder ruled out by a psychiatrist, but almost 15 years later I “fit” the diagnosis. My current therapist said I’m one of the most emotionally stable people she’s ever worked with and if I didn’t have these symptoms she wouldn’t need to see me. So I definitely don’t think so

[GrEeNbEeNs in reply to CrystalBeach1]

Thanks very much for your reply it's much appreciated I'm not sure how to respond to it due to lack of concentration and finding words your feedback has been helpful .Thankyou

[Lady4 in reply to CrystalBeach1]

We are yet to have a psychiatrist appointment but pretty sure she will say the same about my son, its got to be in the subconsciousness (in our case).

[210272]

Great question - thank you. The powers that be took out the need for a 'life event' fairly recently since they were/are aware that people don't need to have had one to develop the symptoms associated with FND. As for migraine there isn't much literature about the psychiatric side of things although I did find this: 10.1186/1129-2377-16-S1-A41

However migraine is not precipitated/perpetuated by people's maladaptive cognition, behaviour etc etc (as per Perez) and FND is, according to him.

[GrEeNbEeNs in reply to 210272]

Thanks to everyone that replied to my questions about how to cope with being hypersensitive to noise and if they thought that FND was caused by trauma or anxiety your response has been very helpful and interesting.THANKYOU

[Diamonds4ever]

Hi, I suffered migraines in my early years, but after having given birth, they almost disappeared. My FND was triggered by an allergic reaction to my covid injection. Within 10 minutes of having the injection, I took bilateral bells palsy and was admitted to the neurological ward where I had to learn to walk and talk again. I have been living with FND for 3 years now.

[eviedotty in reply to Diamonds4ever]

I find this very confusing, please do excuse me for being blunt but I have dystonia and I have three cavernoma in the left side of my brain each has bled over time and left challenges related to the bleeds. Now one example is two muscles in the right eye are affected which means my eyes have episodes of struggling to work together and the optician made me glasses which sorts this out, I have tinnitus and the ENT department tested my hearing and I now have a hearing aid for the right ear. Essentially the cavernoma are in the left side of the brain and any relevant effects are in the right side of the body so for me that’s quite straightforward and I should also add it was a neurosurgeon who did this explanation and relevant diagnosis etc so am not sure you get any higher qualifications than surgeons but a neurology doctor added FND to this. I asked my gp what symptoms do I have that relate to FND and he said none that I can see from the correspondence, so what is my care plan, well if there are no symptoms then there wouldn’t be any need for a care plan was the reply. So you can see my dilemma when a person has issues which are backed up with hard evidence by medical professionals who have done the tests and relevant follow up etc why is there a need for the diagnosis of FND. I am at present fighting with the NHS because I have respiratory issues from asthma, Covid lung, a physical injury from a fall causing soft tissue damage to the upper spine area behind the lung and they want me to go back to the neurologist who cancelled my appointment and dropped me from the clinic because I had a bowel complaint which got me admitted to a hospital ward and gave me difficulties getting downstairs so leaving the house was just not possible while my bowel had literally turned to water. I asked the last two doctors I had to be seen by because the breathing thing gets nasty with my oxygen level at its worst dropping to 60% what can a neurologist do about the lungs surely I should be back at the respiratory clinic? So the outcome as I see it is that once you have the FND on record other issues don’t necessarily need medical intervention and this scares me. Sorry for the long post but I just wanted to be clear about what I was meaning. I will add that being looked after by the relevant professional for the relevant issue has given me a good standard of life

[GrEeNbEeNs in reply to eviedotty]

I couldn't agree with you more once you have FND on your records doctors don't want to send you for tests to check if there could be something else going on.I'm not sure if you know that FND can cause bowel problems.

[eviedotty in reply to GrEeNbEeNs]

No I didn’t actually but what I will say is someone on my dystonia support group has bowel issues and has had every test going which all came back clear and so she was sent to see a physiotherapist and shared the exercises she had been given which are basically pelvic floor exercises and when I thought about how bad things were at it’s worse when I was admitted to a hospital ward and got blood work and scans done etc I was told that I had diverticulitis but I didn’t and still don’t seem to tick the boxes for this so in applying logical thinking I came to the conclusion that I would have next to no muscle control when I was admitted to hospital and so I started and have continued to do the pelvic floor exercises and it has given me a really good outcome….not fully resolved yet but 100% better than it was. I am at a place were in general I have a huge distrust of a lot of doctors. I was admitted another time for a bleed on the brain which was detected by a CT scan. Now a junior doctor approached my bed and tells me thats excellent news that your cavernoma has not bled and I replied that’s excellent news and now can you please arrange for my discharge paperwork to be done because I no longer have a reason to be here. Then a Consultant came to see me to say that doctor should not have spoken to me the way he did because my brain was actually bleeding and I would have to be kept in for the usual three days then have an MRI scan to make sure it had stopped bleeding and the reason I couldn’t leave the hospital before they were certain the bleed had stopped was because it could become a catastrophic bleed which would require emergency neurosurgery. I do find doctors exhausting when they don’t seem to be able to agree on one diagnosis and stick to it when it has been backed up with hard evidence

[Lady4 in reply to eviedotty]

From the posts that I have read having FND on your record can mean lack of support for other conditions, even if you had been previously receiving care. As your post says there are no symptoms that point to FND and other specialists have agreed, insist it is taken off your records. If this is a cost saving exercise by labelling patients, it needs calling out. It makes my blood boil reading these posts, they are playing god with people's lives.

[Misstea]

Yep, that's my experience. I've had migraines since I was 13 but at the tender age of 35, I had two notable migraines where my speech patter was disturbed. The first was in January 2019 and the second in March 2019. March was when the speech disturbance stuck with me and ruined any hope of continuing to work in customer service. I will add that I also developed degenerative disc disease and also found it's the price I paid for being active-ish.

[GrEeNbEeNs in reply to Misstea]

Thanks to Diamonds4 ever and Misstea for your reply I have had FND for 8 years I have lots of symptoms I'm not sure what triggered mine but I have had trauma in my life and I do suffer from severe anxiety but some thing keeps telling me that it's not why you get FND,my psychiatrist told m that this theory hasn't been proven yet.I'm not very good at replying my concentration is very poor and I get stuck for words I also get facial ticks when I go on my tablet or try to read or write. Hope yous are both well and thanks again.

[GrEeNbEeNs in reply to Misstea]

I have left a message saying thanks for your reply but I sent it to someone else that replied to me but I mentioned you aswell.Thankyou