Iv just found your post about FND. I have posted on here a few times about episodes I have had since my stroke that initially were being called decompensations. I have had two more episodes in Feb and early March resulting in being sent back to the Stroke clinic. I am having further investigations but FND has been mentioned. Like you I was told to look at the same website. Not all my symptoms match with those described on the site. I would be interested to know if anyone else has heard of FND and what their symptoms are. I will post again when my test results are in and let you know what they decide. My symptoms are ataxia in my legs, numbness in the right side of my face and elevated heart rate also general feeling of fear and confusion.
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@Ktrean60 my FND seems to manifest in functional left limb weakness which mainly affects my leg. Iāve not had an official diagnosis yet but suspect my dizzinessnand balamce issues may be FND related too.
I think FND is used to describe a multitude of symptoms that are otherwise unexplained it is difficult to know what is or isnāt FND. My biggest fear with it is that once your records show FND they just fob you off and put everything down to it. Itās important to stand your ground if you ever do have to visit the hospital.
Good luck and i hope things settle soon for you.
Ann x
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Thank you Anne. I also have some balance issues but not all the time. I have read that stroke can cause FND but to be honest I had never heard of it before it was suggested. I have the same worries as you regarding the fnd diagnosis. I am personally worried there is something else going on that hasnt been picked up yet. It will be interesting to see where this goes for both of us any anyone else here who has had this possible diagnosis.
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Yes I have also had a diagnosis, November 2023, which badly affects my sleep. I have aphasia from my stroke but physically I was good. Then the FND got worse after my stroke and then I had a very strong reaction to a recent Covid jab which has exacerbated everything. So I havenāt visited this Group as much as I would like; my stroke has taken second place to the overwhelming FND. I feel that FND has an element of āmind over matterā. It can be puzzling in the mind; itās the symptoms that are so painful. I have spasms/jerks most of the time and often let go of what Iām holding. A packet of frozen peas all over my kitchen counter, frozen leeks all over the floor, ditto cat kibble, and almost jabbed my face with a pair of scissors stuck in my fingers! Interestingly Iāve never dropped anything serious like a kettle of boiling water. I wonder if that because in that instance I am really focussing on what I am doing? Good luck with your treatment. In Scotland the Government seem to be moving towards accepting FND. They have recently published a āpathwayā document on the disorder. Do you follow the FB Groups MrsK has mentioned?
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It sounds like youāre having a really difficult time of it @Bibs and I hope your symptoms settle & you find abway through them.
Iām going to have a look at the Scotland guidelines out of interest. I wonder if England will produce something soon.
Best wishes
Ann
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Thank you Ann for your response. I am very relieved to be having help now. Initially physiotherapy and later pyscho/neuro therapies I think. I am avoiding more drugs! In case you havenāt found it: https://www.nhscfsd.co.uk/media/oc3bl5ss/fnd-national-pathway.pdf
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Thank you for sharing the link. I have emailed the doc to myself so I can read it properly. I see it is dated May 24vso is very recent but very welcome.
Iām glad youāre getting some help now & I really hope it provides some respite or even cure for your symptoms.
Best wishes
Ann
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Thank you for posting this link, I will read it with interest. I havent had a diagnosis but fnd has been suggested and I was given the
neurosymptoms.org website by a consultant.
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That was the website I was given too & then left to get on with it. I notice in the Scotland FND pathway it says that shouldnāt happen so maybe thecrest of the UK will catch up soon. Who knows 
Sadly when it comes to FND there are so few specialists in the condition that the vast majority of the country get fobbed off with the website. Where there are specialists the waiting lists are so long it is often years before anyone gets seen. Madness but thatās how it seems to be.
The profile of FND has been raised a bit recently so maybe others will follow Scotlands example.
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You are right Simon. My experience here in Scotland is that clinical staff do what they can.
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Thanks for your post. I was also told I might have FND over four years ago. After numerous tests (heart, liver, bloods) I was left on my own with no answers. A year and a half of practically begging to see a consultant I had a one time appointment with an FND specialist. He said after looking at evidence, talking and examining me that I did not present with FNDā¦I did however tick every box for ME/chronic fatigue syndrome plus an issue with my nervous system CSS (central sensitization syndrome). The NHS and DWP have been less than useless but I have never been one to rely on others so Iām doing the best I can. Keep on keeping on. Thanks for sharing,
Dan
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I had no follow up since being told I had FND either. I was basically given a web address & told to go away & research it. I havenāt really had a formal diagnosis I guess. Well, I donāt have a consultant letter specifically stating it as a diagnosis. I am glad you managed to eventually get an appointment with an FND specialist & you now have a formal diagnosis even if it is one you donāt want. Where was the specialist based if you donāt mind me asking?
Take care.
Ann
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Hi Ann,
It was at Derriford Hospital in Plymouth. Apparently the stroke association really rate him. Dr M OāGara, his specialty is FND so I was told. Hope you get a diagnosis soon. Itās so frustrating it became my full time job with the amount of effort I put into it. The system is failing us. Itās so broken.
Best wishes,
Dan
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Thank you. I am a long way from Plymouth but will definitely have a look. The system is most definitely broken.
Best wishes
Ann
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