Help !!!!!!

[Johnny70]

Hi all I've been bothered with like ms symptoms for over 9 months now.so finally got to see a neurologist and he suggested a spine and brain scan.got a letter last week saying my scans seem to be clear so he thinks I have functional neurological symptoms.i haven't a clue what this is.hoping someone can help.seem to be going backwards instead forward

[malalatete]

Hi there. The best guide to FND is generally thought to be the neurosymptoms.org website. I would agree with that. It is a really good starting point and I am surprised your neurologist didn't direct you there.

FND is a diagnosis which means that whilst it is clear from your symptoms that something is affecting the way that your brain is functioning, you do not have any of the lifelong or degenerative disorders which can be clinically assessed by neurological testing or scans such as MRI.

It can be hard to get your head round the fact that this is actually very much a step forward. Hearing that you do NOT have MS, or MND, or early onset Parkinsons type disease is a real cause for celebration.

It is true that a diagnosis of FND is tantamount to your neurologist saying either 'I don't know what has happened to your brain' and/or 'I don't know how to fix it' which can feel a bit alarming at first - but the thing to hang onto is that even if they HAD given you a different label there was no saying that they would have been able to fix it anyway... I live with 2 other neuro conditions besides the FND, one structural, one not. They haven't been able to 'fix' either (even with brain surgery).

So I guess what I am saying is that the best way to cope with a diagnosis of FND is the way that you would cope with any diagnosis, really. You inform yourself as much as you can, become your own expert. You work out by trial and error with your GP (or without them depending on what route you take) what treatments, therapies and lifestyle adjustments help you to manage your condition or live better within its envelope. And you hope and pray that one day the medical world will make the advances necessary to be able to tell you and the rest of us what it is that has gone wrong so that one day, perhaps, but only perhaps, they might be able to fix it.

This site is a good place to get advice on how to manage, reduce, and overcome symptoms. It is worth keeping a log of symptoms and anything you think may be acting as a trigger and causing deterioration. That will help you to undrstand clearly how the condition is affecting you and what changes you can make yourself to reduce the effect it has on you day to day.

Other things to Google are 'pacing' - moderating activity levels so you don't go 'boom then bust', stuff on sleep hygiene, pain management, and diets that control energy production such as the low GI diet.

Hope this is helpful.

[Johnny70 in reply to malalatete]

Wow thank u very much 👍

[Johnny70 in reply to malalatete]

Wow thank u very much for ur input I will go onto that site and look.i don't see my neurologist till next Wednesday to be told of fnd really is.all I know about it is that's what he put on a letter saying I didn't have ms but I think it's fnd as u have all the symptoms.thats 9 months I've been off work and thier patiance is running thin the way I haven't had a diagnosis yet 👍👍

[cgarff in reply to malalatete]

Well done, I like the keep things written down part. I have tried to do that myself over the years. It becomes helpful with each doc you see. What symptoms you have had. What prescriptions you try, work or fail, what tests have been run. I wish I had done a little better, but you keep hoping it will get better, and something new pops up, so I didn't think to make a better detailed list.

I have learned to keep smiling through it all. It beats the tears, and depression that can come. And I am learning to work within my means, meaning to pace myself better and listen to my body, because of I dont, I seem to pay for it.

[Johnny70 in reply to cgarff]

I'm on anitryptoline,dihydrocodeine,for pain,fleuxitine for my mood,megabegron for my waterworks which nothing works no more.i finally got diagnosed with fibromyalgia on Monday but wasn't explained enough.is that a form of fnd ??

[cgarff in reply to Johnny70]

Wow, they do have you on a lot of meds. I'm so sorry you have to go through this. I am not sure if the fibromyalgia is part of it or not. But you never know. Nothing seems to amaze me any more about this.

[Johnny70 in reply to cgarff]

I know.got my meds changed yesterday and I'm on a morphine sulphate now.its the pain I can't get under control

[cgarff in reply to malalatete]

Well said!! You nailed it!