Hi everyone, I’ve had FND now for about 8 years, I’ve been a member for just over 6 years this is my first post. I’m 52 years old and have a long list of illnesses and conditions.
Last month I lost all use and strength in my left side(this is my bad side) I also lost my speech, husband rang ambulance, I was taken to hospital and they couldn’t make there minds up if it was FND or a Stroke they got there top consultant on video call to get his instructions because I was still under 4 hours for a new fast acting clot busting drug which also had risks to taking it after a short while and trying to communicate we decided to try it and on the following day I could say a odd words and little bits of movement the day later speech was better I could say short sentence, I think it must of been Stroke and they treated me for a stroke (clot busting medication) put me on the stroke ward. However on my discharge letter under diagnosed it had…..??fnd?? Then underneath ?? Ischemic stroke?? In all the years I’ve had FND I’ve never had these symptoms would love to hear what you all think and anybody had the same thing happen to you thank in advance for your response.
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Tramar72
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hi and welcome, 2018 June was blue lighted from one hospital to another as they suspected stroke ( was in 1st hospital for 15 hours) after three days, various tests was told it was not a stroke and discharged with a neurology appointment in 6 months my GP was not happy and got me an emergency appointment. December 2019 (19 months) diagnosed with FND and discharged. I had problems walking, talking and thinking. I learnt to walk again now about 65% of normal ( neuro-physio) and talking is a lot better but memory and thinking is a problem. But now I have to find my own way (very hard) . I think as they put FND that’s your main cause and TIA is your secondary cause they never put that on mine it said Stroke undetermined? Hope you find some answers here. Kevin
Thanks Kevin, They treated me for Stroke and because I already have FND that was the only reason they was querying the FND if it was stroke it wasn’t TIA it was full stroke one of the nurses passed comment that the recovery was in keeping with a stroke. On discharge the doctor said if I wanted to see neuro ring my consultant or see gp.
I think one of the issues was it wasn’t my local hospital, we were at our caravan so in there terms I was on holiday it was scary as it was but in the 3 days I was in hospital they never gave me my normal medication and some medication shouldn’t just be stopped so I was also on withdrawal. My Husband had taken my blister pack in so they could see what I was on but because it was weekend they couldn’t get in touch with gp and said we don’t know they are yours😤😡🤬😭 (it had 14 prescription labels on with all my details😤🤬)
Have you tried some games that can improve things for you? I have had a number of bleeds due to cavernoma in my brain, proven by MRI scan they exist and the bleeds identified by CT scans with three days on a ward then an MRI scan to make sure the bleed has stopped but even with this hard evidence is still called out as FND! The physio takes care of physical rehabilitation but games like patience with cards and now available as an app, also three in a row bubble games and this can go on to easy word puzzles that build up in terms of difficulty. These can help you focus and improve your brain health and if you find you get on well it can lead to following programs on TV like chaser were other tips for improvement can be learned . From here you then have a marker that you can use to see how you are doing, you also have a therapy that you can follow again and again when things start to slip
I use them as a measure for how things are with me and sometimes I have to start over because I don’t have the concentration coming back from long Covid on top of the other issues has been a nightmare
I had covid last October (2023) and when it’s on top of everything else that’s going on it is hard, I had covid for 12 days then I had 2 upper respiratory infections that needed different antibiotics different bacteria then had tonsillitis twice and pleurisy all before Christmas so because Covid started it all they have said I have long COVID they went all through my symptoms against the criteria I just keep wondering what’s next what else can I have. Your right about games and measuring concentration and some days it’s what concentration
I had Covid twice since 2019. I find that I think twice about reporting symptoms because of the FND diagnosis. I attended a neurologist for ten plus years for dystonia and then the dystonia became hard to manage for a while so they decided it was FND and now I am attending neurology again but my neurologist retired and so I haven’t been allocated a new doctor yet. I am a bit overwhelmed with it all to be honest. I got Covid this was followed by repeated chest infections and the outcome of this was Covid lung and that was managed by meds to reduce the amount of mucus the lungs made and respiratory physio, all with good outcomes. I then got Covid again and the dystonia got brutal with the outcome being basically a list of injuries from the individual events. So that tallied up to, 2 cracked ribs, 2 jaw injuries, a knockout head injury and then another cracked rib and a cracked vertebrae. Now all these injuries were diagnosed in the A&E department just to be clear with the advice that it would take a given amount of time for each injury but this would be longer if the dystonia can’t be brought under control.
Jump the story on and life in general became quite challenging in short. Now I was put under a terrific amount of pressure to reconnect with neurology and meantime I developed a bowel issue called diverticulitis and was hospitalised for that and then life got incredibly interesting with my first appointment for the neurologist being not possible while I was getting control of the GI issue and this was down to very little control over the bowel.
The first appointment comes that I did attend and the doctor looked at me and said I take drugs and I know I did, no explanation or other details about this and I was distraught, what also happened was a physical examination which resulted in a diagnosed upper soft tissue injury to the upper spine area and six weeks on my back on morphine and paracetamol. I spoke to my own GP about the accusation of drug use and asked for a tox on screen to clear my name.
Jump the story on again and the second appointment earned me a further injury to my neck by way of strained muscles. There was also a decision to have a multi disciplinary team meeting which turned out to be more like a kangaroo court resulting in the second injury when tests were carried out without support for my injured spine that was still healing.
Now jumping forward again and at the end of this month I have my next appointment and I feel like I am between a rock and a hard place because they have the FND diagnosis to place all these injuries on and I feel pretty positive that they will do this,meantime my GP has supported the damage and injuries acquired alongside the changes that I have made to the care plan. Now the changes have had a good outcome with as of today I am almost nine weeks without events and that’s the best I have done in many a long term. My GP having taken the line that I am not going to get any better is now on board fully with lots of well done etc and he has written to the neurologist to explain that the spine needs to be afforded more care when I am in the department.
The next hurdle is neurology and I have done a small agenda which they will receive before the appointment basically alerting them that personal safety will take priority over anything else that they have planned. Using previous CBT, physio learned and the games we speak about has given me new hope and more energy which has to be managed in a disciplined way due to the spinal area injuries sustained at the clinic. My life presently is lived at home in a positive way with good outcomes but medically in a very high risk way down to the ego of the neurology department who have FND to fall back on if they don’t get on board with the improvements made so far. In short I fully expect to be screwed if I follow them and equally screwed if I don’t and I can’t find any place to hide. I don’t have an allocated doctor in neurology and the last meeting they brought in six doctors who sat in front of me while I was told complaining about the first doctor who injured me was not on, this followed by an assessment that caused another injury and this caused a major dystonic event and the six doctors left the room and told my daughter who was with me to organise my rescue meds and then the six doctors came back in and basically I would have to report that the whole meeting was ran in what felt like a disciplinary fashion that I have major difficulties in remembering much about it. I then got a random letter through the post to go for heart tests which was cancelled by me because I had a flare up of the bowel issue and so it goes on and on and on…..sorry for the long post but it amounts to four years of long Covid and the impact on neurological function
I’m so sorry this has happened to you, Doctors/Consultants are supposed to be there to help, support, advise, diagnose and give treatment in whatever way is necessary. Sometimes it’s good to off load and have someone to listen or read what’s going on in your life someone to scream at.
I have ischemia on my heart muscle. Actually landed in the ER with the drs discharge paperwork stating to consider myocardial infraction. Smyptoms resolved on their own by the time I was in the ER, and they said they couldn’t treat me because I have a team. Followed up with them and didn’t get any answers to that even but was diagnosed with FND. Had stroke face and all.
hi there, did they do a cat scan and an mri on your head? I ask as the same thing happened to me last year and they told me the only way they can know for certain that it was not a stroke was to do a mri of the head. If that comes out normal then it can’t have been a stroke.
That’s what they did for me to confirm the head and neck were ok because every time I landed at the ER for my symptoms, I had elevated clotting levels. By the time they image, symptoms resolve and nothing shows because I just died at home and in my car to even get to the ER because I couldn’t see move breath whatever the symptoms were going on at the time. My main frustration as an FND patient is how does someone tell me hey your symptoms are real but we can’t diagnose what it looks or feels like. There has to be a structural problem. Well I would say this is structural if my body is doing it to itself and it’s taking my ability to function. But I just pray it stops happening. FMLA is near impossible to get especially if you’re young like me. I just turned 28. I know myself if I could get sufficient time off work to heal I would be a lot better off then where I am today. An FND diagnosis should come with an automatic month off work to heal. Especially if you have PTSD with live triggers too. Hang in there and just rest. Remember you are sick and need to rest. I always forget that part and then I get worse and the stroke face starts to come back. It’s like I could send myself into literally what feels like will kill me. It’s a dangerous game to play and we need to remember doctors are also trying to learn this as we are. I rely on my neuro team, pcp, PT team, and my CBT team to help me understand . The ER doctors were never too helpful just check to make sure you’re not dying. FND is a sick son of a nut cracker like that. I like to say it’s my fn’ douche😅
The same happened to me with the mri. It was horrific. I only managed it when they let my partner in with me. But rest assured though that I was told very clearly that if it had been a stroke it would have shown up on the mri. So assuming yours was clear then that’s a good sign that it wasn’t a stroke. I also was in a horrific way. I’d not long had my second daughter and I was petrified. All my tests came back normal including bloods and mri and they said the diagnosis was FND + my normal migraines. I was then sent on my merry way with a million questions. It makes me extremely anxious when I get the sensory issues and I have to actually tell myself that nothing bad is happening- it’s the FND. It’s so so hard as feels horrific but by being confident that is not something more serious going on makes me feel a bit better. Although I wish I could just be normal again.
They should not diagnose FND on the basis of normal test results alone so unless you've been told what 'rule in' signs were used to make your diagnosis I would question if it's the right diagnosis for you. What treatment plan did they give you for the migraines?
Sensory overload can be hard to manage and hospitals are some of the most difficult environments for people with sensory processing conditions. Good that you've got your confidence working for you - hats off to you for that
hiya, yes there were several rule in factors apparently with my loss of touch sensation. Amongst other things. My main point in that particular post was that it is (at least for me) reassuring to know it was not a stroke. The lady was not sure if what she experienced or not was a stroke so I was stating that if you have an mri that is clear then it’s not a stroke. Again, at least this is what I was told anyway.
I still to this day doubt what I was told and ask for reassurance as I still (including today ) get numbness all down my left side including my face. Literally my left side feels like a completely different person to the right and I get so so anxious that I start thinking it is something serious but then the dr tells me it was not as tests were clear and that should be reassuring to me etc..
Believe me, I find it very very hard to trust and accept this diagnosis as what I feel is so so real and it scares me so badly that it’s made my anxiety so so much worse.
In regards to the migraines I’ve had them since I was 12 and I’m now 42 so I see a neurologist every 3 months for injections and take Propranolol and nortriptian (or whatever it’s called when I get the migraine). Since 2 years ago my migraines have changed and I loose speech, vision and feeling in different parts of body. Also things are not where they are if they makes sense. It’s very scary so even though I’ve always had migraines since I got this FND diagnosis they have changed dramatically and that’s why I came out of the hospital with a diagnosis of FND plus severe migraine.
I still work full time and have two little children and the last year has been one of the hardest as I don’t like or understand what’s happening to me and comes out of the blue and hate feeling out of control.
I use to have migraines about 30 years ago and thankfully they only lasted about 18months and that was too long and it’s surprising how they effect different parts of the body so i really feel for you. You are doing wonderful to be working full time and having 2 young children you should be proud look at what your achieving as well as putting up with being ill good luck going forward
I feel for you and hats off to you for recovering your strength well enough to write this post. I haven't been through what you've been through but for a dx of FND to have any validity you need to have been told what 'rule in' signs were used when the dx was made.
As it happens, I just saw this post via Neurology Journal about this type of stroke which may be of interest to you:
This study aimed to investigate the relationship between reversal therapy and ischemic stroke, between duration off anticoagulation and risk of ischemic strokes or systemic embolism and between timing of anticoagulation resumption and risk of rebleeding. bit.ly/4crIv3P
I’m still recovering slowly but surely I was dx with FND about 8 years ago but the symptoms of the stroke have never been my FND but everything for me seams to be pointing to a stroke and not the FND
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