torbay

[tatiyana]

i have been ill for over 9 years, just been diagnosed with FND. i recently saw a neurologist in Exeter, he is the one who diagnosed this for me as Torbay was usless. sadly i can not have access to Exeters FND clinic..my doctor wrote to me to ask if i want a referral, i phoned to say i need the referral 3 weeks ago...no responce from doctor.....stilll waiting. i just want someone to help me...im fed up with being usless, dropping things, not remembering anything, falling over thin air, etc...starting to hate life as no one cares..apparently im a hypocondriac

[Mygeordiebud]

Hi Tatiyana

I was diagnosed early this year stated after I had spinal surgery.

My FND is gradually getting worse started with my left leg then left arm now some mornings it can take me 30mins just to be able to move a little bit at a time. Then got vertigo which ain’t nice followed by arm or leg tremors finally fatigue which means I can sleep up to 18 hours a day and when I wake you I’m still tired.

Since you live in Exeter UK you can ask your GP to refer you to the Rosa Burden Center in bristol it covers the whole of the south west of England they specialise in neurological diseases include Huntingtons, FNN Parkinson’s etc you get an out patient appointment and they will tell you there and then if they think they can help if accepted you go in for 3 weeks and see a number of different clinicians.

Google Rosa Burden and vist there website.

Mark

[tatiyana in reply to Mygeordiebud]

thank you xx

[gmod774]

Hi my wife was diagnosed at Musgrove Park hospital, neurologist. He referred us to Bristol southmead hospital Rosa Burden Centre, they have consultant's who are specialist in Find. It may be worth you speaking to your Gp for a referral

[tatiyana in reply to gmod774]

thank you xx

[Mygeordiebud in reply to gmod774]

Hi

Nice to know I’m not the only one in Taunton Somerset with FND.

[RobertWT]

Oh Tatiyana,

What may I say. Been there, done that, bought the damn T-shirt!

Useless? Well, I drop things on a regular basis. I cannot hold two teaspoons without one finding the floor. My feet are the same. Frequently I trip. I fall. I stopped counting after 100 falls. It was just a number. I am on friendly terms with the triage nurses in A&E "Oh Hell, not YOU again!" then the "Doctor I have FND!" followed by a "wtf is that?" expression and my explaining that the dis-order (I shall not dignify it by calling it a disease!) is simply a disconnect between the amygdula (next to the hypocampus in the brain) and the rest of the body (well, the CNS, central nervous system). The disconnect causes messages to be garbled. Hence all the palava about dropping things, falling, speech problems, pain, parallysis and the host of other signs and symptoms that FND brings.

What you should remember is this. FND is a real illness. It is "not in your head" or "imaginary" as some 'doctors' suggest (numpties!) IT IS REAL.

When (note the optimistic 'WHEN') you see a neuro in Bristol, be well prepared. Have a list of your symptoms and history. Also understand the nature of the beast. Here I can help you. There are two excellent web-sites that are a mine of information:

neurosymptoms.org (created by Prof Jon Stone, of Edinburgh) and the host of lay-person-friendly articles on the fndhope.org website, penned in the main by Prof Mark Edwards (St George's London).

These two guys are at the very top of the tree for FND. Prof Stone wrote or edited the practitioners' handbook and Mark Edwards is a very knowledgable and sympathetic neurologist who is very supportive of FND Hope (as is Jon Stone - both are on the FND Hope Medical Panel).

A further resource you may like are three FND Hope facebook pages:

FND Hope

FND Hope: a place to Rant and Rave

FND Hope: Mind Body and Soul.

A search of fb should unearth these pages. They are all closed groups. No cry for help gets ignored, no rant is criticised (unless you have the timerity to suggest that FND is a fake illness. It isn't, as I said above. Unfortunately some numptie medicos use FND as a diagnosis when they really mean DBK or DFK (Don't Bloody Know or Don't ... well use your imagination!) Thus FND has been used as a depository of mis-diagnosis and has attracted (as a diagnosis) a degree of scepticism that it simply does not deserve.

In my experience the fb pages are populated by empathetic, sympathetic, helpful, non-judgemental people who know how FND FEELS (as they have felt/are feeling it).

That's about it. I lurk about the three fb pages. It would be good to see your name there too!

So become wise. Learn all that you can. The road back (or on) is through you relearning to send and receive the messages between your mind and your body.

It all sounds so simple. It is tough and sometimes the pain, frustration makes the journey from 'can it kill me?' to 'Please can it kill me?' an easy line over which to cross. Don't go there!

Remember that you are not alone. There is a FND (FND Hope) community who can help with support, advice and experience. Your posting here was an excellent start. Please carry on and be well.

Robert WT

[tatiyana in reply to RobertWT]

thank you so much x