Small update. Letter from the consultant yesterday:
The initial results of your genetic testing are negative. This is the spinocerebellar ataxia panel and it showed no evidence of spinocerebellar ataxia types 1, 2, 3, 6, 7, Friedreich’s ataxia and SPG7 related ataxia. Genetic testing for hereditary spastic paraplegia is ongoing
Yours sincerely
Consultant Neurologist
Ataxia is the symptom of lack of balance.
However, Ataxia is also a genetic disease that is quite severe and has some similarities with MS. There are different varieties of ataxia. I know a brother and sister who attend my exercise class and through them other people.
Diagnosis of MS often needs other options to be excluded. At least MS is not strongly genetically based Ataxia is bad news for your family.
There is no genetic test for MS though some genes do increase the likelihood but this is nothing like a genetic disease which is inherited from your parents so clearly runs in families.
I would take a negative result for Ataxia as good news but not having a diagnosis must be very frustrating.
As a follow up, last month I got another letter from my consultant.
“Mr greengiant’s GAD antibodies (a test for stiff person syndrome) and genetic testing for hereditary spastic paraparesis are negative.
Yours sincerely
Dr Z Consultant Neurologist”
I am hopefully getting referred for more physiotherapy (supposed to have been neurophysio, but more a case of the physio telling me to try and walk normally).
So looks like FND is the correct diagnosis. However I am still concerned about my ever weaking and clumsy hands… Unfortunately now I have a diagnosis of Functional Neurological Disorder, everything from now on will be put down as a symptom of that.
So I’m not really sure where to go now… I’ve been “diagnosed” (more a tick box exersise I think), and discharged.
Hi Greengiant,
The one positive about FND, if that is actually what you have, is that it can be reversible, as it is often caused by maverick rewiring of the brain, but the brain is usually plastic enough to be able to rewire back to normal.
Hopefully you will get some good physiotherapy. Unlike normal muscle strains etc, it takes much much longer to get results from physiotherapy when the brain needs to rewire.
Physiotherapy is not used often enough, in my opinion, in dystonia (which I have), which is a rewiring issue, probably because it takes a long time to work, and you need to be persistent, but also neurologists like to give botox instead to shut down the overactive muscles in dystonia, as the effect is very quick. However that just treats symptoms and can have some very nasty permanent side effects.
Good luck.
Small follow up.
At the start of August, I applied for Adult Disability Payment (Scotland’s version of PIP). I am pleased to say that I have now been awarded Enhanced Daily Living, (zero on the mobility part), 2 year award. I think the fact that I used a third party organisation (Fightback4Justice) to help with my application, helped me get the Adult Disability Payment.
So at least should i get made redundant / dismissed on capability grounds at work (which is looking more than likely), at least that will be some money to keep the bills paid.
I have been seen by the neurophysio again, and expressed my concern about my weakening hands, and the fact that nerve conduction tests hadn’t been carried out. Pretty much the reply was that I need to “Embrace the neurologist’s diagnosis of Functional Neurological Disorder”. 
According to the physio, more and more people are getting diagnosed with FND. I wonder if that is because it is an “easy tick box diagnosis”, which gets patients “diagnosed and discharged” with minimal testing? It does make you wonder though.
Nice to hear from you, and glad to hear you’ve had success with ADP.
I do think the FND is an easy box to tick, for some neurologists. As you say, gets them off the books. What has the neurophysio been getting you to do? Anything more than ‘walk normally’?