Just diagnosed with FND

JasonBayliss

Hi, my name's Jason, I've just gone through a year of testing, MRI's showing some white matter brain damage, and a shed load of tests including lumbar puncture. Prior to the results of the lumbar puncture, because I've been off work on long term sick, I was diagnosed with MS by an occupational health doctor, just by physical examination and physical response tests but now (last week) my neurologist's come back with the results of the lumbar puncture and said it's definitely not MS but FND. Having looked at the symptoms of FND it does fit, I have fatigue, dizziness, gait disturbance, painful joints (particularly knees), I get quite a lot of dissociation although never had a seizure yet, just prolonged dreamlike, "out of body," feelings, spasms, jerks, and a constant feeling of being at sea, as if I was very drunk. My question is, is it normal for a neurologist to diagnose you with FND and then just say, "So you don't need to see me again." It feels like she's just washed her hands of it. To be fair, apart from with my G.P. I've had to really fight to get any testing done. For the first time in my life I feel really let down by certain people in the NHS.

Ami2301

Welcome to the community @JasonBayliss and I'm sorry to hear what has happened recently. Your neurologist shouldn't discharge you once you have a diagnosis. Has she suggested medication or other ways which may help you manage your symptoms? Information like this is important.

I have been in your position, when I first received my diagnosis of Ataxia - I was given the diagnosis and then I never saw the neurologist again. No advice was given at all. Thankfully, I have been with an incredible neurologist for the past 3 years now with whom I have regular 6 month check-ups. 

JasonBayliss

Hi Ami, thanks for responding. No the neurologist's mentioned nothing yet, except to tell me that she didn't need to see me again. But I won't give up, it's just a shame that we have to fight to get anything done. ❤️

Ami2301

I agree, and I'm just sorry this has happened. You will find another neurologist Let us know how you get on and if there is anything else that we can help you with

Chloe_Alumni

Welcome to the community @JasonBayliss! Sorry to hear this.

Have you ever looked at FND Hope? There is some really useful information.

Please do let us know how you get on, I also have moved your post into the main section of the forum.

underdiagnosed

Hi Jason, yes I'm afraid this is not uncommon, a similar thing happened to me and I have all too frequently (but not always) felt let down by the NHS. I had to see a neurologist in a different part of the UK as there is barely any neurology on the NHS in my area (you can expect to wait years). My GP is currently trying to refer me back as I have other unexplained, very disabling symptoms as well but we are finding it difficult to get an appointment anywhere at all at present. This no longer worries me as I'm perfectly used to this kind of problem and am lucky to have a supportive GP who will fight my corner for me. I expect to be seen by someone somewhere eventually. But it could take many months and my condition continues to deteriorate in the mean time. I hope you find the support you need soon