FND diagnosed but I’m uncertain??

[Sj2103]

Hi, I been having symptoms for nearly 3 years now. It al started when I had my little boy by c section, when they did my spinal I had a pain shoot down my right leg it jolted and it really hurt me but they said it was normal for that to happen. After I had the baby I had really bad cramp and spasms in my right leg and I was having choking fits in my sleep I also had pain in my right shoulder when I would drink something. After about 8 months I flew to Greece while I was there I had a funny shock

Feeling in my chest while I was sleeping this bolted me upright and I just thought I had a bad dream. Once I got back I noticed I had really bad stress and anxiety more than usual then about a month later I started having awful headaches and dizzyness all the time I was sent for an mri and nothing showed then I started to have these funny turns where I was short of breathe, I felt a gushing sensation in my chest my back would throb and I would feel so u well with it. I had bloods done a back chest x Ray and nothing showed, then the swallowing issues started and the weight loss which caused me more anxiety and stress and I was still having these funny turns. I went for a camera doe my throat which was normal the first time I have since had another one as I’m still having all my symptoms this time I had an incompetent cardia but all my other tests have been normal. I am still having all the symptoms but I do have some better days although the dizzyness and disorientation is with me everyday. I am at a loss as to what it is I don’t know what else to do, I have since been having twitching all over my legs constantly and muscle weakness an emg showed normal. I just don’t know what to do now as I feel no better but nothing is being found and it’s all since my c section. If anyone has any advice or could help I would really appreciate it. Thank you

[Hidden]

Well Im a man so sorry for not being to relate to the pregnancy part. But what I can say is what I went through and to help grasp this kind of condition.

I was diagnosed with siezures in 2017 then other things happened after. My gait started to change.Then my speech started to slow and stutter. Then I had staring. Then my hands and legs got stiff. Then I would black out, looking like I fainted. Then recently I had my eyes wouldnt open. My mouth stayed open once. I have felt pain too.

Notice a trend?......... The trend is the brain. Youre not doing things by your choice. Your Brains software glitches.

But too help you that helped me is find out or do what makes you happy. For me i work on vehicles and tradesman. I love creating, designing, fixing reinventing, learning, speaking about systems and physics. Boy stuff! But my brain gets very woken up! I type letter per letter now to keep pace of focus and task. These types of things really help my happiness and in turn actually have me realize hey Nothing has happened to me?!

I dont know why this happened to me but hey stuff happens. When you have something happen to you next time GET AN ICE PACK AND PUT IT ON YOUR SKIN. The closest place like your ribs, neck, breasts, face, anywhere sensitive. My eyes light up so wide and a lot of times slowly things go away. When I have bad walking I walk backwards. It works. If I have speech problems I write, sign, text, or stay silent.

I try to eat right and slowly am staying away from alcohol (never drunk). Alcohol has shown to my FND be worse. One night after my eyes closed I woke in the night for the bathroom. My left side didnt work. Its scary but I need to always know if its motor skills related its FND itll pass. Maybe look to you child for love and comfort. I do with my wife and 3 dogs

[Sj2103 in reply to Hidden]

Thank you for your reply, I’m slowly getting used to my symptoms I just hate it when I have these funny turns and I’m in the middle of a shop with my children and all of a sudden il go dizzy feel faint and shaking it freaks me out. I just keep hoping they will find something eventually until then I have to deal with it.

[humph3 in reply to Sj2103]

I have some similar symptoms but what is FND?

[Elisha87 in reply to humph3]

Fnd functional brain disorders .it's when the brain send different signal down the wrong path fnd like a hard ware our hard ware fine but it's our software that the problem

[humph3 in reply to Elisha87]

Thanks Elisha87 I have been diagnosed with peripheral neuropathy some 20 years ago but my symptoms are more akin to what people are describing here. Having looked at the FND Hope website I certainly will be following this group more closely. I have seen my neurologist recently and he has never mentioned this. I am just glad that I am not alone with my weird symptoms - thanks again.

[123lisa]

I've had 2-c's and didn't have a jolt I'd say they hit a nerve in the spine, as fir the rest I don't know but I feel we get fnd is just another way of saying "we ain't gotta a clue so we'll just ignore it and hope it goes by itself ".

X

[Sj2103 in reply to 123lisa]

Thanks for replying, I completely agree with you , I mean I have had a lot of investigations done but I still haven’t had an mri of my chest area as I feel it’s something to do with my nerves from what happened with my spinal, it just seems weird it all happened after. I mean my first c section was fine!! I’ve been referred now to a pain team who deal with the nerve system etc so I’m hoping they can send me for mri’s (fingers crossed) 🤞 x

[Elisha87]

Fnd can we caused by giving birth .truma .and U can me born with it . magnesium help and B12 nothing we show up on the test as of our nerves .and keto diet has helped people with fnd .franktion oil help with pain twicting normal

[pickleweed]

You might want to take an antidepressant for a few months, regardless of whether or not you have depression or anxiety. There are different types of antidepressants. Try to ignore the strange sensations that you have; tell yourself that your brain's signaling is messed up.

[Kittilyn]

So sorry to hear this and it sounds like maybe when you had your 'spinal' (epidural?) they may have hit a nerve (hence pain in your leg) & this has triggered what is being called FND?

I am just guessing from what you say, & I think you should insist on being followed up more by your GP. It's not acceptable to just leave you to put up with these symptoms.

I do find that with functional symptoms, doctors often just aim to treat or mask symptoms, & not much try to uncover underlying causes. This approach can be helpful if it helps quality of life, but isn't good enough if there might be a better treatment or even cure if they actually find out why it's all happening.

Wishing you well. Take care.

[Sj2103 in reply to Kittilyn]

Thanks for you reply, yes I completely agree with you I have been saying this to them for 3 years now that it’s seen since they hit my nerve it’s truggered all the symptoms, they still haven’t given me a ultra sound of my leg to look for a nerve problem then at least they might find some answers there, all the tests I have had none can see my nerves . I have been taking mirtrazapine but I can only take 7.5 which does seem to help with the anxiety but my blood pressure is low so if I take any more I have funny turns. I am waiting to see a pain dr that the neurologist had referred me to and after speaking with my dr they are apparently the ones who can decide if I need an mri/ct scan on those Areas, so I’m going to push for it. Thanks x

[Hidden in reply to Sj2103]

Their is a condition called PoTS which tarries with most of the symptoms you describe. You might want to look it up if you haven’t already. It’s quite easy to diagnose if your doctor can refer you to cardiology for a tilt table test. nhs.uk/conditions/postural-...

There are conditions that are closely associated with PoTS and these are Sjögren’s, ME, Lupus, EDS (Ehlers Danlos Syndrome) and MCAD - you could try looking these up and seeing if any seem to make sense to you.

[Sj2103 in reply to Hidden]

Hi thanks for this info it really does sound like my symptoms but I have had an echocardiogram and ecg already done and my heart was perfectly normal. The only thing I haven’t had done on that list is a tilt test, maybe it’s worth having that done? Thanks

[Hidden in reply to Sj2103]

ECG and other basic cardiology tests aren’t helpful for diagnosing PoTS - only tilt table. If this is normal too (as mine was) you could look more broadly and search for symptoms and gather signs of autonomic dysfunction relating to various connective tissue diseases. These are rare and certainly many GPs and neurologists fail to take them into account, if they are even aware of them.

I mean conditions such as CNS Lupus, neurological Sjögren’s, CNS Vasculitis etc. All these systemic autoimmune diseases can be triggered by pregnancy or a traumatic cesarian/ epidural.

If you’re in UK you may have to start with private specialists - say at St Thomas’s London or the London Lupus Center. But all are strongly associated with autonomic dysfunction and personally I would certainly be wanting these fully excluded before accepting a diagnosis of FND.

You could start by ordering autoimmune panel blood tests but they don’t always show up on these so you may need biopsies to confirm.

You could join the Lupus UK HealthUnlocked community and read posts. There is one just now about Neurological Sjögren’s. You could also post yourself on there and tell people of your plight with FND diagnosis. Many will respond with suggestions and advice I’m sure.

[Sj2103 in reply to Hidden]

Thank you I will go back to my Dr and ask for more bloods etc. the thing that gets me is I really suffer with pain in my right leg since my c section and they still haven’t done a mri or a scan to check if something has happened to my nerve in my leg!! You think they would have started there!! Thanks again I really appreciate all your information