How quickly do FND symptoms come and go? And what spectrum of ailments might be covered in a 6-12 month period? It is unbelievable to me how many neurological symptoms I have been through this past year. Tinnitus, hyperacusis, blurry vision, burning feet, weakness in legs, hymnogogic hallucinations, sleep apnea, loss of fine motor skills (shaky hands), internal tremors, sleep jerks/acting out dreams,twitches, and so forth… I don’t know how a doctor could take me seriously. The good news is they don’t all stick around. Is this a normal presentation? Dr’s have ruled out myelopathy, MS (no lesions), and no one has suggested Parkinson’s. When I play Dr Google, I am often led to FND since my imaging and blood work are clean. I am seeing my 3rd Neurologist in a few weeks, and I am hopeful they will help me feel better about my journey. My hospital (MGH) does have a unit dedicated to FND but I don’t want to push my Drs or turn them off by diagnosing myself.
I’m at a loss… I go to bed anxious wondering what is next…
Just looking for some opinions… thank you
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seamuspg
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Mine is more gradual but have good days and bad. Started what I call crab walking 2017, vering to the left, constantly bumping mainly left side. It's progressive, I'm about to see the neurologist who diagnosed FND as my symptoms are worse. I did have one neurologist who decided it was depression, I stopped my antidepressants with gp support, that was 2yrs ago. I really don't think they understand FND, the brain is so complex. Neurologist didn't think rehab the answer as my husband needs me for his continuing health problems. I'm still allowed to drive, neurologist said, you might not walk straight but that shouldn't affect your driving. RTA, where you get your licence are aware of my diagnosis. I can't drive out of town, but thats more to do with my heart. Hope this next neurologist is one that you can talk to, and actually listens. Take care. Moni
Hi I am almost three years into my FND journey and the difference is astounding! In the beginning my GP thought stroke as I couldn’t talk, stumbled, fell etc but I have been to re hab and learnt techniques to manage symptoms. I retired and pace myself and daily headaches have passed, I have done EMDR and Accupuncture as well.My advice, fight for all options to get those neural pathways functioning and re learn at small steps - in the beginning I could only intonate sounds, then single nouns etc..
Hi, if your medical professionals have ruled out all the well-known major neurological conditions then they are likely to go for an FND diagnosis. Not that you cannot have an Organic Neuro Disease and FND as well, because you can, it just seems FND tends to be their failsafe option and easier to get you removed from their service.
FND means that the brain is not coping with the overload of nervous system signals flooding in and demanding to be prioritised all at once! This `Software, not Hardware Problem' causes all the random symptoms physically and mentally affecting your body.
There is no specific treatment for FND, no support network like with other Neuro Diseases such as MS, only a selection of pre-existing therapies which are supposed to help you retrain your brain to ignore the wrong signals and only accept the correct signals without overloading everything. The only FND medications offered are Anti-depressents and that in itself should tell you how unresearched and misunderstood this condition is!
As for frequency and type of symptoms, well it is totally unique for everyone with FND as each persons nervous system reacts differently to overloading of nerve signals and yet we all have exactly the same diagnosis, yes, it is unbelievable! I have Motor FND and found that keeping Adrenaline at a medium level helps my symptoms for example. Others with past mental trauma have found Cognitive Behavioural Therapy has helped overcome symptom triggers etc.
When discussing your symptoms with any medical professional I would stress the effect of the unwanted symptoms on your everyday life and not go into what you think are the issues. Speaking from my own experience, they do not respond well to being told your opinion as to what the diagnosis might be, despite you obviously knowing your body best! You can subtly hint in a vague way as to encourage them to think about symptoms in that direction, if you truly believe you have FND - but remember you have to live with the condition and the medical diagnosis stigma in the future!
Don't go to bed anxious. Learn to relax before going to bed as I have found out going to bed feeling anxious leads me to have weird things happening in my sleep. Fnd it is what it is. You will have good days and you will have bad days. Take each day as it comes. Learn to pace yourself. Educate yourself on fnd and get to know your triggers. Hope this helps some how. I have never been to rehab, or been told what to expect. I educated myself once I was told and trial and error to find my balance. Kindest regards
It sounds as if you have FDN,although everybodies symptoms are different, although all seem to add up to the same thing,
from reading what you have said it sure does sound like FDN, you just need a neurologist to tell you so, as it seems to make us feel better if we can put a name to it!
You must be strong concerning your Doc as this is a fairly new illness and not all accept it.
sounds like many docs have done tests on you, but thinking about it all points to FND,
YOU SOUND VERY STRONG, AND I WISH YOU MUCH LUCK, PLEASE LET ME KNOW IF YOU GET A DIAGNOSIS XXX
Hi, I must admit that in my case I have good days and bad days more bad, in 2018 I was rushed to hospital with suspected stroke, three days later discharged with no answer could not walk properly had to fight to see a neurologist and after many many tests and 18 months was told i had FND. I learnt to walk better with neurophysio (she was the first to suggest FND) and got me on an FND trial which was working but Covid got in the way. I went to a seminar for FND and was amazed at the different types of fnd one could not talk one talked all the time there was walking and non walking. As soon as I was diagnosed I was discharged from neurology and my GP was not sure but as soon as an other medic had written fnd in a letter they believe it and now try to help, so i have found that i just present with what ever is happening to me and allow them(doctors) to come up with answers. but you have to keep on at them politely to find what works for you , i am being put forward for PPSS (persistant physical symptom services) which involves physio, neurology and various therapys cost was an issue (£4000) but they are running out of options so i am on the list. i have found the process of fnd diagnosis and treatment to be ultra slow so you have to be patient. hope you find the answers your looking for. kevin
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