Confused

[Legbrace74]

When reading posts on this website it seems most people with FND have good days and bad days some even go symptom free for a while. So my question is is it normal for me to have no feeling on my right side from my 12th rib all the way down for the last 5 years with no change no good days or anything. I was just wondering if any one else has similar experience of no remission or anything.

Thanks for readiing

[malalatete]

Not really sure what you mean by 'is it normal'. Clearly not in the general population. But it has become the new 'normal' for you. As your MRI showed it not to be a structural problem there is nothing 'abnormal' going on in that sense.

If you mean 'do others with FND diagnosis experience this' then you may find someone does...or not. We all tend to have different experiences and be affected in sometimes vastly different way. So you won't necessarily find another person reporting something similar - mind you, that won't tell you that it isn't FND, because 'normal for FND' doesn't seem to exist.

[Legbrace74 in reply to malalatete]

So if they don't know what it is and your MRI is clear it's functional

[malalatete in reply to Legbrace74]

Probably more accurate to say if your MRI is clear it is not structural i.e. they have ruled out other conditions where there would be loss of or defect in grey matter, such as MND, MS (except in its early stages), Lewy Body disease, etc etc.

Functional just means 'we don't have/haven't done the scans that will tell us what is wrong'. That can be budget related (as in the total lack of fMRI on the NHS except in urgent or research cases) or technology related - they really don't understand more than a fraction of the brain with the tech currently available.

That's not to say that the tests available are infallible...they missed a 9mm brain aneurysm on my MRI in 2009 and it was only picked up by a different consultant in 2015. Not that it was causing any of my neurological deficit, but it still needed to be dealt with.

[Cookiecc67]

Hi until recent treatment I never had days when I was able to walk unaided but pain and fatigue could fluctuate. The nature of the condition is that it impacts everyone differently but all patients have symptoms that can present in such a way that a neurologist can diagnose FND.

[Legbrace74 in reply to Cookiecc67]

What treatment was it you had if you don't mind me asking

[Cookiecc67]

Hi I had specialist in patient physic at St Georges hospital in London. It is intensive but so far has changed my life.