I have been diagnosed with Functional Neurological Disorder

Everyday living
1

I have been diagnosed with Functional Neurological Disorder is this the right Forum to ask questions and to find out if their are other people on the Forum with Functional Neurological Disorder who can help me.many thanks

2

Not sure if its the right forum, but Functional Neurological Disorder certainly sounds like a posh way of saying MS !

But hey Iā€™m no expert, Iā€™m just another victim of MS !

3

Thanks jactac, that is what the neurologist in st georgeā€™s hospital, tooting, London,diagnosed me with so I am no expert as well !

4

Iā€™m not one to question the diagnoses of a consultant neurologist but when I was being investigated for my symptoms the neuro told me that, in his opinion I did not have MS, I had a ā€œfunctional disorderā€.

After a lumbar puncture he had to change his mind to primary progressive MS.

So, in my opinion, you are on the the right Forum.

Regards,

Anthony

5

i think itā€™s just one of those labels that they stick on when they donā€™t have a definite answer!

it sucks.

stick with us lot because we offer a shoulder to cry on, sound advice and a big load of silly madness (see brain fog thread).

whatever label each of us has we are all in the same boat!

carole x

6

Have a look at https://fndhope.org/ I do think that many people are diagnosed with FND as a sort of ā€˜weā€™re not sureā€™ diagnosis. But there is no doubt that it does exist in its own right. So, in the short term, it seems that accepting the diagnosis is a starting point, and continuing to keep an open mind whilst following the guidance of your neurologist. Sue

7

itā€™s a bit like saying you have definitely got a rash but there is some uncertainty whether itā€™s measles/chicken pox/german measles etc

1 Like
8

I too have been diagnosed recently with FND also Disassociation Disorder.
I have PPRMS. I started having seizures last September. They are similar to epilepsy. I take blackouts, and become paralysed. Yet I can hear everything. In fact my hearing becomes super sensitive.
I experience out of body experiences.
I cannot swallow and my breathing becomes decreased.
Triggers are: Stress. Fatigue, anxiety.
If anyone can relate please share.
Thank you

9

That sounds tough. Have they proposed any treatment for your FND? It seems to be a postcode lottery for FND treatment though. It is getting better understood though, so things may be improving in terms of treatment available.

According to Jon Stone, who is one of the UKā€™s experts on FND, FND is quite common in people who have organic neurological disorders, such as MS. He says as it is potentially treatable then it is important to make the distinction between the symptoms that are FND and those that are MS and get the right treatment for those FND symptoms.

10

Hello Ziola, and thank you for your kind response here.
I am very fortunate that my MS clinic does specialise in FND and I did ask for more help. Sorry for late reply.

11

Hi Jactac, some symptoms of FND mimic symptoms of MS but it is not related to MS. I was told my MS probably triggered it in my brain.