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Today is just ridiculous!

Okay so no diagnosis yet other than confirmed pheripheral nerve hyperxcitability and trigeminal neuralgia. Waiting a neurologist to look at my head scan since it was organised by a maxio facial consultant. Ongoing range of symptoms.

But today I’m all over the place with balance and coordination its so frustrating and unnerving.

I have to think really hard to coordinate my fingers even to type this. I manage but I have to think so hard to get my coordination and movement. I’m also experiencing what I can only call ‘jerks’ usually my arms or neck/head. I tried to walk toe to toe like the neurologist once asked me to few years back and struggle keeping balance. All my movements and thoughts feel so much hard work!

My eyes focussing are really weird to. I can look at screens and things started to blur in a weird unbalanced way.

Whatever the diagnosis this is so frustrating. Especially with kids and partner running around house no idea how hard work it is to just do normal things!

Pain from TN is constant and twitching ferocious.

Just never ending oddities…

hi trueman

sympathy for your problems with balance and co-ordination.

physiotherapy would be good but will be difficult to get before you have a diagnosis.

however, with kids in your home - have you got a Wii?

wii-fit has good balance and co-ordination stuff and is worth a try.

even if it is difficult, you can improve day by day.

you need the wii balance board too.

take care especially with your eyes being affected.

carole x

Thank you Carole. Appreciate the response. The balance dizziness/vertigo and fumbling coordination is really getting me down this week. So has the confusion. It’s like my brain can cope with any sensory stimulation because it’s simply in overdrive trying to cope with normal things. I’m at a loss at the moment knowing hope to cope. I’m supposed to be ‘normal’ and starting a new job albeit part time on Monday yet I can’t even drive this week! Or go into a shop…

I’ve a long wait still for neurologist opinion (Jan most likely). And this TN diagnosis by maxio facial consultant has left me dangling as having read about it - it can be due to inflammation of blood vessel? And he wasn’t qualified to interpret scan further hence neurologist. I’m sure he said it was position of blood vessel but not sure he said that now. So loads of questions but a wait for answers… If at all.

My twitching is so bad that my whole finger or arm can jerk. Or leg. Arrrghh… Then family just think I’m bonkers cause I struggle to walk yet they don’t really see it. Other than when I bump into something.

I have a Wii U. I shall try it this weekend. Admittedly I don’t get enough exercise. Feel wasted afterwards. But maybe just the balance things so good advice thank you.

I hope you are well today.

Trueman,

I am so sorry that you are having such an incredibly hard time and that the road to diagnosis is so long and difficult for you. I wish I could offer some advice (I think Carole has done wonderfully there) but I just wanted to touch base with you to let you know I am thinking of you, sending you as many positive thoughts and vibes your way and I truly, truly hope you get the answers you need as soon as possible.

Meli

Hi Trueman.

What a horrible time for you with all this going on, sometimes life can be such a b***** sometimes !!!

I am a newbie at this too so sorry no advice… just empathy.

I hope your visit to the neurologist brings some sort of good news… a diagnosis of something where treatment can help.

I hope things turn out ok with the new job

x Laura

Thanks Laura and Meli. I appreciate someone listening. I’m muddling through today. Trying to tell myself I will manage in Monday!

I try to be positive generally but the constant stream of symptoms and the bizarre variation in them from time to time is depressing when you don’t have an answer to them.

In limbo you constantly question your sanity!!