Unexplained Medical Symptoms, FND diagnosis

[Dragonfly7]

Hi, i am new here. I have had problems with shaky legs, tremor, balance and sensory problems for 7yrs now, Neuro said it was Somatic and then Doctors just refer to it as medically unexplained symptoms until December 2017 when another Neuro diagnosed me with FND. Been told by Doctors that i have to accept what is wrong with me but how do you accept something you don't understand?. What is the best way to get people to take notice of me?

[malalatete]

Oh Dragonfly - 8but you do understand this - in fact you understand it better than they do. That is why they can't give you a name for it (FND is a bit of a catch-all diagnosis, seems to mean 'something is obviously wrong, but we're not really sure what it is, and we can't see from our tests and scans why this is happening').

Firstly, take that last bit as good news. You have not got one of the horrible, usually degenerative, neurological conditions that show up on the scans they do/can do. That is a positive thing. However frustrating it feels that the medics haven't been able to scan you and say 'Ta-dah, it is thingummyjig!' that is a good thing. Not all those conditions are treatable, for starters. Having a label to pin on something does not necessarily make it easier to live (and die) with.

Secondly, be proud of the fact that you are your own expert. You will know by now, I imagine, (and if not some careful self monitoring will soon tell you) whether there are any triggers for what happens to you, whether anything exacerbates it, what seems to result in a reduction in symptoms. That is the basis for your management plan - and it will involve pacing, careful sleep hygiene, dietary factors, a gentle form of exercise, and some kind of management of your sensory, emotional and mental inputs and outputs too. If you haven't yet thought about it in this way it is really helpful. You honestly are the best expert you will find on the planet to help you manage your condition and to get the best out of life with it on a day to day basis.

Thirdly, it is probably best not to worry about getting them to take notice of you (not sure why you think that would help, tbh - they don't really know what this is, so they can't do much with it). The only person who might be able to take notice of you in a helpful way would be a neuropsychologist, who might be able to explore strategies for coping with the emotional impact this has had on you. I found that support really helpful when my ME/MUS/FND or whatever it was turned my life upside down and left me profoundly disabled overnight. Took me a while to accept I needed it though, about 3 years at least, and after 2 years although I wasn't any better physically, I was much more accepting of the new, slow, somewhat incapable me, and less attached to the physical, mental and emotional whirlwind of a person I was before. Leaving her behind in that therapy room was probably one of the most healthy moves I made.

And finally - about 18 months ago, after 7 and a half years of pretty major disability, and at a time when any 'somatic' or psychological theory would have deemed it most unlikely (I was going in for a procedure to stent a life-threatening but inoperable brain aneurysm that had been picked up belatedly on an MRI review) my neurological deficits eased. The use of my legs to walk (in a way that means that I don't look like I have wet myself) returned. The fatigue eased off (my stamina isn't quite back to 'normal' and I still pace carefully), the brain fog dissipated (mostly - short term memory hasn't quite recovered, probably never will), and overall the cognitive dysfunction lessened to a point where I could start doing a part time course, giving me hope that I might even be able to retrain and replace the 20 year career I was medically retired from 5 years ago. I still have blips - symptoms will return -bang- but they have so far always disappeared again after a few days. I am always aware that the next blip could go on for years rather than days but so far with a solid retrenchment plan put in place each time things have got better again quite quickly. A key part of that plan is to accept that my body has this thing that happens and that I have to take steps to listen to what it tells me - so I get the mobility scooter out, pull back from anything I was doing, proactively rest, detox - and remind myself again to live with 'the condition' not in spite of it or by wishing to be out of it. It is what it is, and there are plenty of people more profoundly disabled than I am (or ever was) who live wonderfully well.

There is hope for change and recovery here - because structurally, there is nothing wrong. It is just your internal signals have gone a bit haywire in a way that isn't really understood yet. Listen to your body with confidence and trust that you know what is best for you. Your doctors can no more cure you of this with the current understanding of the brain than they can cure the common cold. But you possibly can - by trial and error, careful self watching, and by relaxing into who you are now and living today to the fullest you can given where you are at today. You don't know what tomorrow might bring. The switch might flick back and things might suddenly start to recede (they did for me - twice). That is a dodgy switch though and you can't assume health (as usually defined) as a given any more. For me that is double edged- tomorrow might bring an ME/FND relapse that simply doesn't go away this time, or the aneurysm might blow. But I am not going to let it worry me because whatever state I am in, this day is going to be the best I can make it. And there's no doctor on earth that can prescribe something to make that happen.

Take good care of yourself.

[Dragonfly7 in reply to malalatete]

Hi thanks for the response. Having read a lot on the site I now understand it better I just get frustrated at times. I know two of my triggers, one is pain and the other is tiredness but still have odd attacks of losing my balance but can't work out what causes them. I am doing well at the moment thanks to seeing a wonderful kinesiologist who has taught me relaxation and destressing techniques and i have a meditation session with her every week. The only problem now is the doctors blame any new symptoms on my Fnd so I have ended up going to the hospital where I was diagnosed with a low potassium level and had to be put on a drip and given supplements. Does anybody else have this problem?

[pickleweed]

Where I live in the USA, physicians did not take interest in my FND. I suggest that you buy the Kindle version of Handbook of Clinical Neurology, volume 139, on Functional Neurologic Disorders. You can have an Amazon.com Echo Dot or Kindle "text-to-speech" (under the Kindle "Tools" menu) read it to you.

[Dragonfly7]

Hi, thanks for the response. I have found doctors and physio's who aren't interested in Fnd, but think it's because they don't understand it either but would be helpful if they at least told patients where to find help such as Fnd Hope. I will have a look for the book.

Thanks.

[Hidden]

Have you been thoroughly tested for Lyme Disease??

[Dragonfly7 in reply to Hidden]

Hi, I haven't been tested for anything else like that, i have had blood tests that all come back fine except my potassium level and some others are nearly out of reference range and say observation next to them but the doctor says it's nothing to worry about. I had a Brain MRI 6yrs ago which was fine and a whole body MRI except head last year, i have a prolapsed disc in left side of my neck and dehydrated discs in my lower back L4, L5 and S1 which cause problems, got Fibromyalgia apparently even though didn't have the tests for that either was just told that so not really sure what symptoms are what. Any advice would be appreciated, Thanks :-).

[Hidden in reply to Dragonfly7]

So sorry to hear of the prolapsed disk in your neck and the dehydrated disks in your lower back Must be so painful.

I love the way you've been told you've got Fibromyalgia with no real proper physical tests done for you. The medical system just placed you into a little category file to satisfy themselves.

Had LOADS of tests myself including a brain MRI which all came back normal. Have a read of my bio if you click on my nickname C-B-S and I can inform you more if you have further questions.

Such a difficult journey that we are all having to deal with.

Where are you based?

Kindest regards!!!!

[Dragonfly7 in reply to Hidden]

Hi, thanks for the support :-). I will have a read of your bio. I am based in Sheffield UK.

Take care.

[Jofachiz1]

Hi There. I was just reading through posts and something about yours caught my eye. Are you able to describe your symptoms a bit more. I was misdiagnosed with FND and it was a long hard slog to get anyone to take me seriously but there are physical causes for these kinds of disorders that won’t show up in a MRI or scans.

Hope to hear back from you

All the best.