Recent FND diagnosis

[ChrisH1987]

So I'm interested to find out and learn about FND. Around 4 weeks ago I went to bed (totally normal) and woke up having what I thought was a seizure.

Went to A and E because they wouldn't stop but I was awake and aware. Anyway, all they did was a blood test and I was sent home until I saw my GP the next day for the results.

The next day I was told at the GP it could be a reaction to a medication I was taking (citalopram) and to stop and come back a week later.

Anyway, symptoms got worse in this time. I was now nodding constantly (tics), making noises, struggling to talk . Every day worse and worse.

So after the week was over I called the GP but I was unable to talk properly. I spoke to a different doctor this time who was unsympathetic and this time was told wait another 2 weeks.

This was until I managed to say (after a lot of trying) "my speech is getting worse".

Basically the doctor didn't realise my speech had changed and thought I always struggled to speak.

Once he understood i was told to go to hospital urgently to be seen.

Spent 24 hours in the RVI newcastle who are excellent by the way.

Anyway, incidentally through the scans they found a cyst on my brain (non cancerous hopefully). Lucky I got FND suppose otherwise we wouldn't have knew! Bonus!

After many tests, scans and injections I was diagnosed with FND. Quite quickly compared to what I've read since.

I didn't even know what FND was. No clue at all.

Since this my symptoms have worsened. My speech is pretty much gone or so forced and slurred. I've been proscribed propanolol which seem to have lessened the tics. But they still happen and I still have tourettes like symptoms. My legs now give way and my hands lock up a lot.

I now have to take written notes to the shops as its such a struggle to speak.

Basically the point of this post was to see who else suffers like this.

People don't seem to understand and I'd like to speak to others who have been through this.

Also sorry for the rushed writing and poor explanation but I don't want to go on for weeks.

Oh as I side not to this, since diagnosis I've read and watched a lot. Doctors seem to be clueless a lot of the time and I'm in early days.

Stay strong.

Chris

[SNOW10]

Yes, everything you mentioned is how it goes. You have a new symptom everyday. I am better now in alot of areas but I still stutter sometimes and jerk before falling asleep completely. Haven't had a seizure since July (they finally have me on seziure meds now). The touretts has gotten better but I curse alot now when I didn't before. I learned if I try to hard or don't allow my brain to catch up it's harder to communicate. So I just allow things to flow and not stress my brain out to much when trying to talk cause then I stutter more. I hope things get better for you soon cause everything you mentioned especially not being able to walk , talk properly, and involuntary movements isn't fun. Best advice I can give is be patient with yourself,allow your body to rest when it needs it and listen to your body best you can.

[Van604]

You're right - doctors (and everyone else really) are pretty clueless about FND. That's because traditionally it has been seen as a psychiatric problem, diagnosed mostly in women, and consequently has been under-researched, and sufferers have been fobbed off or drugged to the eyeballs. A few neurologists are finally taking an interest in it and advocating for patients, which is hopeful. You will need to do your own research and be prepared to educate doctors, nurses, paramedics etc on it. A good resource is the FND Society, which comprises the doctors and researchers who are interested in it. They have webinars and other resources on their website. One thing though - it's unusual that they have found a mass on your brain and still diagnosed you with FND. Most FND patients are told their tests are normal. So I would make sure that's followed up. I was diagnosed with FND 5 years ago - before that they thought I had Parkinson's or dystonia. I've had most of those symptoms - seizures, weakness, speech and swallowing problems, gait problems etc. They came on very gradually over years, but suddenly got a lot worse after back surgery. They've stabilized now because I really listen to my body and don't push it too hard.

Hope this helps. All the best.

[ChrisH1987 in reply to Van604]

I completely agree. The amount I've learned in the last month is much more than most doctors know. The growth is unrelated to the FND, it was by chance they found it while having scans and isn't thought to be "sinister". Their word not mine. The two aren't linked and all other tes

I actually lucked out a bit and was in Newcastle RVI hospital. Their neurological department has a lot of FND specialists. But once I was diagnosed I was basically left to deal with it.

I appreciate your information so much. Thank you.

I guess the hardest thing is realising life is so different now and learning to live with it. It's early days but it didn't even really hit me until last night.

Hope your recovery is going well!

[kev60]

Hi and welcome, I was diagnosed in 2019 but it started back in 2018 I went to work as normal but when I got there I started to sway side to side and the management would not let me work as it would be to dangerous (I worked in the glass trade) went to a&e and after 8 hours they said I had a stroke, transferred to kings stroke unit . 3 days in hospital then discharged with no answers. Told I would see neurology in about 6 months as I could not walk properly or talk or think straight my GP was good in the fact they chased the hospital for an appointment. It took about 19 month 2neurologists and one neuro-physio to get the diagnosis of FND then I was discharged again . The neuro-physio taught me how to walk better although not 100% . You have to learn to look after your self and make sure FND is on your notes , it seems you have to learn to explain what FND is to the doctors as they have little knowledge about it. Unless you’re lucky and you find a GP that is helpful. I suffer with my walking , talking ,thinking and swallowing and now have a functional tremor so I no longer work and my wife(Lynn) is my carer as I need someone with me most of the time specially when outside. Try and get a referral to PPS( persistent physical symptoms) they can help . Look up neuro symptoms it’s a web site by a doctor who specialises in FND as there are over 200 symptoms. Good luck in the future. Kevin

[Lady4]

Hi Chris, I agree with the others you (in my case my son) gets the Chronic Regional Pain Syndrome diagnosis and FND diagnosis (although latter not highlighted until nearly six months later) and are left waiting ages for appts that you have to constantly chase and when we got a Neuro appt and promised "talking therapy" referral ... nothing, not even a letter following the appt, its disheartening and added stress chasing everything.

Drop attacks, leg tremors, headaches to name a few and at times it feels like your on a roller coaster. My advice like others is look at the FND websites, forums, learn from others and challenge the professionals, if you know they are wrong. Its sad as we shouldn't have to educate them as well as society. I had an added battle with the school for non attendance and endless ssafeguarding visits.

We go through periods when everything is normal which enables me to recharge but on the flip side not many friends understand and they try and give advice but nowadays I have just said thanks and they know when to back down be it with good intention. I just take each day as it comes and try not to get stressed out myself.

Most importantly be kind to yourself, practise meditation, mindfulness and theres a whole lot of other resources, advice and links attached to our accounts.

Can you associate the onset with any triggers, any added stress etc. The symptoms are said to be caused by messages not going through the correct way. There is a great video on neuroymptoms.org that shows a distract technique that stops leg tremors, I tried it with my son lying down lifted the one leg and the other stopped jerking temporarily. Also, the neurophysio we saw mentioned a grounding technique, didn't quite master that one though.

Take care.

[Froobydoo]

Hi Chris. I had a similar reaction after having the covid vaccine. My neurologist diagnosed FND at the time and I learned that this really means they don’t know what’s wrong with you. He said it was my immune response to the covid vaccine clashing with the stress I was under at the time as I was caring for my mum with dementia. I have now been diagnosed as the vaccine causing an autoimmune disorder with small fibre neuropathy and suspected Sjögren’s. Good luck and keep pushing for answers. Shona.

[Lorraine6463]

Hi. Iv had FND for 8 years and i struggled tremendously in the first 5 years i was wheelchair bound, with no capacity to feed myself, communicate. Along side getting seizures, pain And paralysis. It was traumatic going from being very active to this. It seems like there's no hope but I have come along way since. I learnt to walk again with aids i have psychological therapy, pain management and am on some helpful medication, baclafen helped significantly with my seizures. You are not alone