hi little cook , I’ve been diagnosed with fnd somewhat 10 years now . When I read your post straight away I thought maybe you’re suffering from Hemiplegic migraine , migraines are another annoying symptom of fnd . I also suffer with these kind of migraines as well as ocular migraines.
I’m so sorry you’re having to deal with this awful diagnosis. Please know you’re not alone.
Some of your symptoms sound like migraine symptoms and I've seen far too many people with migraine get misdiagnosed with FND. However if you do have a FND dx then the care home can't discriminate against you and should be able to make work place accommodations for you. What further tests are you meant to have? If you haven't been told then I'd ask your GP (or the practice manager) to find out and arrange for you to have them. It might also be worth contacting FND Hope UK for further information and advice and I'd also ask for an urgent referral to a migraine specialist.
I'd also ask your GP to find out what the rationale is for your FND dx - they shouldn't make it just because you haven't had a stroke, they need to provide evidence of the 'rule in' signs.
Hi Littlecook, do you get any remission from your symptoms and I wondered how long you have had them for. I second 210272 to finding what "rule in tests" they used to make the FND dx.
My symptoms seem to last anything up a week to two weeks goes off for a couple of days then back again it makes me feel so tired anx I just want to sleep all day .
Have you had them long and is there anything that sets them off that you can think of. Its sounds like you may have Chronic Fatigue but stress and anxiety in the mix doesn't help or maybe you are wanting to sleep more or not wanting to get up and that can make us tired too.
Try not to be too hard on yourself, maybe practice some mindfulness whilst your waiting to get some answers.
I do suffer from anxiety mild sleep apena FN1 I've also had rear cancer twice , I'm always tired .
I can just be resting and it just comes on I go very dizzy left eye gets very heavy and mouth dropping on left side and very tired so I can't think of anything that brings it on .
I just feel useless to everyone specially my wife . Have a great Easter 🐣
So have you had it long? Happy Easter too and I am sure your wife doesn't think your useless and realises you have just be dealt some bad cards lately. You have overcome Cancer, so this is just another hurdle you can overcome.
Plus, this article goes suggests other reasons. Helpful to rule out everything else (although that should be the medical teams role), so you have confidence in your diagnosis:
Thank you for posting and sharing your story. It sounds like you need a referral to a neurologist, so that they can rule out all other causes of stroke and discuss other diagnoses, such as FND. Speak to your GP and ask for a referral, explain your work situation to them also and how badly it is affecting your daily life and ability to carry out normal self care duties. This might speed up the referral wait time.
The treatment for FND is psychotherapy, as it’s due to our brain being overwhelmed by certain situations, sometimes this can be called being ‘triggered’ depending on your personal situation, which triggers our fight/flight/freeze response which then initiates the symptoms, mine is that I have seizures, some people do get stroke like symptoms too. So if you can, ask for a referral for psychotherapy as well or source private therapy yourself to get the treatment underway for FND. Try to eliminate as much stress from your life as you possibly can, start mediation and some form of breathwork exercise like yoga or Pilates, as surprthis really helps to release trapped emotions. Sometimes we don’t realised how stressed we are until our body forces us to stop and take a look.
I wish you all the best with your journey, please take note and listen to the signal your body is sending you, if this is FND then you will need to do a complete overhaul of your life to such as changing lifestyles to improve your health and well-being.
I've seen my neurologist that's taken 5 years I need more tests and bloods done to check for sny rear systems he doesn't want yo commit him self saying what he thinks until I've had tests like the fine needle test in face but you know the nhs could takes months or even years.
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