Hi, I'm new to this forum,Recently it's been mentioned that I have FND? It would take me ages to explaine all the tests etc I have had and so many different dignosis?? since 2009ish. I was also told I have FTDementia. My question is can you have or is there anybody that has both these conditions? I am finding all this very frustrating.. Ive gone from being active in a demanding role to now having problems functioning, pain, movement problems,balance, taste, eye problems, socialising and tiredness is just some of my symptoms.
Take care
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Wildhorses34
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Hi Borrow, thanks for the reply, I was told back in 2016 to do my bucket list as the diagnosis of FTD would give me maybe 2-8 years... after seeing another neurologist he think I have FND (which i'd never heard of) I just want answers fed up with possibly's..
Also, I'm suffering with muscle wastage which is quite apparent on my arms and legs..
I have done a lot of reading about Dr Jon Stone, interesting
Hi, short answer - Yes you can have FND in combination with any Neurological disease or condition. It is as common as Parkinson's Disease or Multiple Sclerosis and I think I read that 1 in 5 Neurologist visits turns out to be FND Diagnosis - and it makes no difference about age, gender, lifestyle or where you live - it is worldwide and so far not proved as genetic.
I have had Motor FND for 12 yrs so:
Been there - problems with fatigue, walking, brain processing and functioning with all the physical and mental anxiety in social situations.
Done that - Gone through all the FND Multidisciplinary Therapies available on our NHS in England, which includes Cognitive Behavioural Therapy (CBT), Neuro Physiotherapy, Occupational Therapy and Psychiatric (if needed). Tried medications and done lifestyle adaptions, mobility adaptions etc.
Got the T-Shirt! - Have established what are my main triggers for making things worse and genuinely believe for me the main culprit is Adrenaline overloading the brain, due to the Human Built-in survival instinct of `Flight, Freeze, Flight' response not ever turning off (for whatever reason?).
So my daily management is about keeping my Adrenaline at an even level, like not too much; Emotional upset, Physical fatigue, Mental activity and to be careful in certain temperatures/ low weather pressures. That said, sometimes it works, sometimes it does not?
Most important of all, know that it is a real physical condition and that it just happens to some people, well, a lot of people and the longer you wait for a diagnosis before any FND Therapies the less likely you are to recover your `normal' life i.e less likely to be cured.
A good source of information and hints/tips is Professor Jon Stone's website
It goes through some basics about FND, but you should know that the types of symptoms can be vastly different from one person to the next even though we all have the same diagnosis of FND.
Be kind to yourself, search for the calm in the storm!
Hi Brokendeer, I'm begining to think the brain is very complicated.. Ive noticed my energy levels are not there, fatigue as you say.. Ive never had any seizures but suffer with really bad headaches.. and my muscle tone is not like it use to be.
Hopefully, get some answers soon as been going on a very long time...
Hi if you are having muscle wastage that definitely is not typical of FND?
You should stress this to any medical professional you see, if necessary refer them to Prof.Jon Stone's website if they are uneducated in the FND Condition.
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