New and uncertain.

[Reikiblossom]

Hi, after 16 months of keeping a symptom diary (recommended by my GP), I've finally seen a neurologist and had a full head and spine MRI scan that came back 'within normal limits'. The neuro seemed convinced before the scan that I am experiencing FND and pointed me to the neurosymptoms.com website.

Having received the MRI letter, there was no mention of what happens next though at my appointment the neuro gave me the impression I'd be discharged back to my GP.

I just want treatment. Dizziness, fatigue, fleeting pains and muscle twitches, poor memory, mixing words, not being able to make sense of spoken words sometimes, tinnitus, feeling shaky, a tingling L face and tip of tongue that feels like its been scalded (for months), wobbliness, deterioration of balance, heat intolerance....I've been on the MSSocietyforum (UK) for a while.

I'm still in Limboland.

[tonker]

im so sorry that your going through so much i too have been diagnosed with FND the best website ive found with information about FND is FNDhope .org ive also found great support and friends on Facebook with a group called Functional Neurological Disorder/ conversion Disorder FNDhope they have really helped me through some hard times if you need to ask me any questions or need someone to talk to im here for you

[Reikiblossom in reply to tonker]

Hi Tonker, thanks for your reply. I'm keeping this off Facebook as I use that for business, but thanks for the suggestion. It may help someone else reading this.

One of the hardest things about this experience is how the symptoms can fluctuate. Some days I'll feel like my old self, other days I'll feel terrible. Sometimes an odd symptom will hit me out of the blue. Despite my 'clear' MRI I'm still not 100% convinced that there is no nerve damage but I will follow whatever treatment I'm offered and let my GP know if anything new crops up.

This obviously affects daily living and being self-employed, I can give myself the time I need. However, the fatigue is the main thing reducing my productivity and affecting my income. Not that I bring much in anyway, yet - my business is only two years old and for much of that I was only working very part time, being mum to a then pre-schooler.

So I'm struggling to nurture my business, raise a child (never learned how to drive and now uncertain if I ever will). Is FND technically a disability? With me, it includes CFS and my GP did scare me a little by referring to that as a disability.

Where do I stand and what help is available?

[FreiNDly]

Hi

I have FND and am coming to the end of my treatment at the Lishman Unit at South London and Maudsley Hospital. I have countless symptoms,many similar to your own so it may be worth contacting my consultant Dr Shotbolt as he is one of the few doctors that I've spoken to over the years that understands and is able to help. Your doctor will be able to refer you if needs be. Hope this helps and good luck.

[Hidden in reply to FreiNDly]

Did the treatment help? I am about to be admitted to the Lishman unit for FND treatment, I don't really know what to expect.

[EnglishIslander FND Hope Volunteer]

Come and have a look at fndhope.org. It's a website set up by FND sufferers FOR FND sufferers. you can also join the private Facebook group by going to the bottom of the Home page and clicking on the Join Facebook Group button. We'll be able to help and support you in understanding what you are dealing with and negotiate the difficult medical pathway. YOU ARE NOT ALONE! There are over 600 of us on this group alone and always someone around to lend a hand whenever needed. Please note it is a PRIVATE group so no-one else on your Facebook can see your posts or replies, so you can talk without fear of others seeing anything.

[Reikiblossom]

Now I've had a letter from my neurologist that basically confirms FND. Not that it was quite so clearly worded.

I see my GP in mid February (I had to wait in order to be able to see one of the two GPs at my local practice that I've seen before.

[pobbles]

Hi my names Alison ive been experiencing similar symtoms to yours since May. I woke up and couldn't walk or talk properly. I was sent to hospital and saw a neurologist who thought I had FND. Ive since been seen again and have had the diagnosis confirmed. Neurologist has discharged me but has referred me to physio and a neuropsychologist which I know has a ling waiting list. I feel like im constantly fighting my own body. Although I now know whats wrong im still feeling in limbo.

[Reikiblossom]

It's such a long wait for any kind of treatment, isn't it?! I'm hoping for something to get sorted out soon after I see my GP. Some days are tough to get through. I tell myself I'm just a bit tired, shaky and anxious but I just really need to talk to someone. I think I'mmore worried than I'll admit to myself.

[pobbles in reply to Reikiblossom]

Its scary frustrating and makes me angry at times. I intially mourned my old life I walked 20 k a week jogged well had a life. Then it changed I now walk with a stick cant get in and out of the bath even with the new grab rails. But I now can laugh at myself when I cant remember things or I forget how to speak. My boyfriend is now very goid at chardes. Laughter is definitely the best medicine.

[Reikiblossom in reply to pobbles]

Definitely! My five year old says I have Mr. Topsy-Turvey in my head

I'm lucky to be mobile but I do get tired muscles easily. They also have a habit of twinging and suddenly feeling weak and I feel like my legs might give way...but its fleeting. Having these alarm bells going off in my body frequently is probably what makes me so fatigued.

However, the habit of bringing your focus back to the positive - or even the downright hilarious - is a helpful way of coping.

[Reikiblossom]

I'm still waiting to be referred to the local Chronic Fatigue services. I know that I'm on the waiting list. I've developed a few new symptoms - droopy eye/ sometimes with scrunched cheek, involuntary movements - these only last a couple of seconds but can throw me off what I'm doing. I also get 'the morning stares' any time of day and I'm wondering if its dissociation.

I've joined the private FND groups on Facebook now and very glad I did.

Tigerfeet - where is that? Let us know how you get on.