I’ve been diagnosed with NFD

[Nannycuddles]

I have daily dizziness for the last 18 months, waited 14 months to get a ENT appointment on NHS. It was a total waste of time. Beginning of this year i started getting body jerking when i laid down to sleep at first i was getting lots but episode was only 1-3 jerks but going on for about 2 hours before I went to sleep. Over the time they got to each episode last 8-12 second each these was vigorous full body jerking. i had over 20 in an hour. Continued until i went to sleep 2-3 hours. Dr referred me to Neurologist that said there was a 22 weeks waiting list. We decided to go private at Spire doctors done the private referral for me, received a text from spire 2 days later say 1st November. When i read that was lost the plot called them and they said its the earliest they could offer. I was in a right state i rang my drs and asked to speak to the receptionist. She was really good and told me to give her 20 minutes and she will call back. She done a search and the nearest place that had earlier appointment was at Nuffield at Cambridge she sent me a link to book it. 21/8/23.
The consultant was a lovely patient man and listen to what i had to say. He carried out lots of different test that made me dizzy, he kept apologising. He said he 99% certain its NFD Neurology Functional Disorder. There is no cure you have to learn ways of reprogramming you brain. The way he explained it was my brain is the computer hard drive thats working fine, my body is the software programs which isn’t sending the correct messages through to the brain.
We decided to still go ahead and have a brain scan. It will be a private one just got to wait for date. Just to cover that other 1%.

[Plantaholic]

Nannycuddles, so sorry to hear about the jerking problem, I have not heard of it before, sounds distressing. I hope the brain scan will help.

[Nanto2girls]

Sorry to hear this Nannycuddles.
Glad you were able to get an earlier appointment.
Let us know how things go when you have had the brain scan.

[Daisy]

Nannycuddles, the jerking must be quite frightening, but thank goodness you were able to get a private appointment. I hope the brain scan just confirms what the doctor has already said and they can advise you how to cope with the problem.

[Lizzie48]

NC, I have never heard of that either, do the spasms come and go or are they regular? I do hope they can advise you on how to cope.xxx

[Gemini]

NC, it's wise to get that extra reassurance that the private scan will give you.

I'm very sorry that you have this condition and that it has given you so much worry.

It does sound as though it will be manageable thank goodness. Keep us posted xxx

[Oma]

NC
I agree the scan will cover the 1% and you will be able to learn how to control them ,

[WeeGranny]

Sounds a bit frightening NC, but hopefully the consultant will be able to give you some exercises to help cope with it.

Cambridge Nuffield is a lovely hospital and all the staff are so friendly and professional. OH had his cancer treatment there for 15 years ( as well as being treated for other conditions including a brain scan!)and we got to know the hospital and oncology staff very well! It was all extended and modernised a few years back which made such a difference to the facilities there.

Hope it all goes well for you!

[Clover]

That sounds very distressing NC . At least now you have a diagnosis.I hope all goes well for you and you soon get some relief.

[Nannycuddles]

Thankyou everyone, I went to Cambridge last Saturday for the mri scan, so will probably hear from the consultant some time this week.
it’s a lovely hospital, treated completely different from the NHS which since the covid you are waiting over a year to be seen, then they don’t give you time to fully explain what’s going on.
we don’t have insurance so paid for the private appointments myself, but the Neurologist was very good, my 30 minutes appointment ended up being 50 minutes as the test he was doing was making me go very, he kept apologising and othering to go and get me a drink of water.
He have referred me to the local vestibular rehabilitation on NHS and suggest if the nocturnal episodes continue to consider a course of CBH with a psychologist, he’s happy to recommend someone that specialises in this area.