Health scare/neurologist

[hlc123]

I am going through a health scare at the moment. For some time I have been experiencing some worrying symptoms - a change in gait, tremor in my hand, poor balance, back pain, twitch in one foot and the same foot sometimes drags

when I walk. Recently the symptoms have got worse and after a fall 2 weeks ago I went to see the GP.
He has done an urgent referral to a neurologist (but this could take months), referred me for nerve conduction tests and I had an mri brain scan and blood tests earlier this week. My fear has been I have Parkinsons disease and the GP had concerns about a tumour, Multiple sclerosis and motor neurone disease but despite difficulties taking the mri images due to involuntary movement, thankfully the brain scan has ruled out a tumour.

There is also a possibility it could be a rare movement condition called tardive dyskineasia that may have been caused by one of my medications (an anti-sickness tablet called prochlorperazine that I had no idea should be taken short term but I have been on for 10 years so we have stopped that to see if symptoms improve although the damage could be long lasting anyway).
I honestly thought the GP would say it was related to my b12 deficiency or menieres disease, but he said he is very worried about me and can see there is definitely something neurological going on.

I have struggled with anxiety for a very long time but at the moment my anxiety levels are higher than ever (my Mum is due to have a lumpectomy this month and then a course of radiotherapy so lots going on at the mo!). I had to take the day off on Wednesday as it all got too much and I couldn't bring myself out of it.
I have always loved walking but it is getting increasingly harder to walk and I am finding I need to leave the house earlier to do the school run, so I can have a breather on the playground before walking home despite it being just around the corner.
I am thinking of going private as the waiting is making me ill but have no idea where to begin? Would anybody have recommendations for a private neurologist in the west midlands area please?

Wow, are you me? I've had this for 17 months now, started off with numbness in right hand and foot. Took 9 months being fobbed off by locums until I managed to see my usual gp who knew right away I wasn't right and had me in for an mri the next day.

8 months of waiting so far for an urgent neurology appointment. Mind you, I have another neurological condition and haven't seen a neurologist for that in 10 years.

I hardly leave the house now as I feel so unsafe. I fell/stumbled onto a main road the other day while going for yet more bloods. Utterly breaks my heart, I'm a shadow of the person I was.

I imagine if the MRI & bloods show signs of a problem you'll be bumped up the waiting list. I know it's a pointless thing to say especially as you have anxiety but try to stay calm until results are back in
I'm under an nhs neurologist at the moment and there is a national shortage, but if I need to speak to someone (I did when pregnant) and it was important-not just a check up- I was able to speak to someone.

Sorry you are suffering too. 8 months and still waiting, that is so bad! Mine is my right side as well.

I think your GP would be the best Person to ask about going private. Good luck, OP. Hope you get some help soon.

How well is your b12 deficiency treated? It sounds like you are already aware that untreated/undertreated b12 deficiency can cause all of those neurological symptoms. The standard 3-monthly injections are inadequate for almost everyone.

My son showed similar type of symptoms around 8 and got worse.

He was diagnosed with hereditary spastic paraplegia which won't show up on mri etc although he had one to diagnose/ rule stuff out.

Some conditions need genetic testing via blood tests as well so I would also ask if they can do this.

I have injections every 4 weeks. My recent blood tests show my B12 levels are very high but folate is low so need that sorting.

Hi @hlc123 How are you doing? I found your post as I am having a similar situation.

I developed foot drop a few weeks ago, and have some other neurological signs. I ended up seeing a private neurologist last week and now I'm waiting for an MRI and nerve conduction tests.

I am also extremely anxious. I just wanted to send you some solidarity x

I have MS and went private. I took my MRI to see the private guy - there is no point in seeing a neuro privately unless you have a copy of your MRI / can afford.to have the MRI done privately.

I'm in London. If you get desperate and can let you know his name.

Good luck

Whatsinadrop

Thanks for your reply. I ended up going to see a private neurologist and he said my tremor in my hand and gait difficulties are connected and it is Dystonia. Still waiting on my NHS appointment but such a relief that he was confident it's nothing sinister. Good luck with your tests.

I was diagnosed at 45 with Parkinson’s disease, I’m 51 now and doing pretty well thanks to my medication. It did take a little while to get it right. Don’t get me wrong I’d rather not have it but a person with PD can live quite ‘normally’ for quite a long time. Your symptoms do sound like PD but I’m not a neurologist. I live a normal life still, I’ve just got a promotion at work and do everything I’ve always done, albeit a bit slower (this is taking a while to type on my iPad but I don’t want to dictate as I want to keep doing as much as possible) I have a couple of workplace adjustments which help no end. I don’t think too much into the future as I want to concentrate on what I can do now rather than what I may or may not be able to do 10/15/20 years in the future. My DH & DC have been great, I can’t be specific other than to say they’ve got it right. I do hope that you are given a clean bill of health and it’s maybe something viral that will sort itself out but if it is PD it’s not necessarily the end of the world

Thanks for the replies

Hi I also have dystonia in my left foot, my foot point down and turns inwards and tries to go over. I did have an mri last year which ruled out any other illnesses, I just have dystonia disorder on its own.

Hi @hlc123 I also have Dystonia, generalised but worst in my neck, right arm/hand and right leg. I have Botox injections every 12-14 weeks, which helps my symptoms massively. I hope you don’t have to wait too long now.

I have functional neurological disorder and have many of theese similar symptoms
i hope you’re doing ok

I also have Botox, I’ve only so doses so far due another next week, I haven’t found the dosage that has worked yet.

Two doses

Hi @Biglumpycustard I’ve been having Botox for nearly 6 years. I have Xeomin. To start with the dose was so low it made little difference, but I have 300 units now (130 in my neck, 70 in my shoulder, 100 in my leg) and it works well, although it wears off after 8 weeks or so.

@Pushkinia I only started having the Botox injections in February. I think I had 200 units in May which I didn’t noticed a difference. I’ve got my next appointment next week, so hopefully the next increase I will see a difference.

@Pushkinia, can I asked,do you wear an afo for your leg.

Suffering similar, had MRI as bad eyes last year, ( still no resolution as eyes optically ok) tremors in right hand, left leg and right leg, and weakness right side, slightly anxious too. Btw just 60
meant to be getting urgent neurologist app, waiting an appointment?!
now I just need answers

No I don’t, my neurologist recommended against it, as I can walk, just awkwardly. I trip easily and fell downstairs last summer, breaking my heel bone and damaging ankle ligaments in the dystonic leg.

@Pushkinia I do wear one as my foot pulls down and I trip over my toes. I wish I didn’t have to.

I empathise. Dystonia can be a bugger to live with!

@Pushkinia I agree with you there.