Not really sure what to write??? - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Not really sure what to write???

Cindy391 profile image
5 Replies

Well??? Here goes. I've been suffering for 6+ yrs. My own Dr basically ignoring me. I had all symptoms of MS. Not coping, stressed thinking I had MS. Eventually diagnosed yesterday having find. I'm glad I don't have MS. But I'm numb. Don't know what to think of do???

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Cindy391 profile image
Cindy391
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5 Replies

I had a similar experience but thought I had motor neuron and was hoping it was ms!

I’m sure you will do some research and come to your own conclusions about FND.

It’s a tricky diagnosis to get your head around and all of the people with it seem to have very particular symptoms.

Lots of support and info on here.

Go easy on yourself- it’s a big thing. Xx

Cindy391 profile image
Cindy391 in reply to

Not sure what to expect???

in reply to Cindy391

Expect things to continue as they have been but you may get some therapy x

pickleweed profile image
pickleweed

What are your symptoms? If your symptoms are visible, do you have a link to video or photos showing your visible symptoms that we can see?

CRPSplus profile image
CRPSplus

Research, research, research. And make sure you engage with quality materials, there is a lot of drivel out there. Aim for medical practitioners and follow their reference lists at the back.

I have a very rare manifestation of CRPS (as confirmed by the UK's top consultant) which was three years in diagnosis, and has now been added to with FND. A combination born in madness, and that is often how it feels. CRPS is recognised as being capable of delivering "the most extreme chronic pain known to medical science", and I also account for up 95% of the FND spectrum in varying degrees at different times. Madness.

The CRPS community believe in individuals learning as much as they can themselves, as often you can be in front of medical professionals who either do not understand or perhaps even know of your condition. I have been rushed in to A&E where I have had such discussions with Lead Registrar's!

Load yourself up with quality knowledge, ask questions, and don't be afraid to challenge professionals either of their own knowledge or their attitudes. I still work full time (just some days, sometimes not - employers need to be supportive), and I maintain a high degree bloody-mindedness aimed at my condition - not me.

Acceptance is the key, and then a commitment to self management. It can be done. You are likely to find Mindfulness a great help, get your GP/Consultant to refer you to a competent practitioner.

All the best.

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