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?

Thanks for the replies. Mine is right hand and right leg. I can cope with the hand tremors but really struggling with walking and constantly tripping as my foot drags. Still waiting on NHS neurology appointment.

I get this as my medication wears off, little thing that I find helpful is the voice in my head as I walk telling me HEEL, TOE, HEEL TOE and as I think it I make sure I put the heel of my right foot down, then walk through to the toes.
i hope you’re not waiting too long for your appointment.

@hlc123 Hi, Haven’t you been referred to orthotics, I got a splint before I saw a neurologist. My foot also drags and I do find it worse when my medication is wearing off. But when I’m out I don’t have to worry because I’ve got my splint which stops my foot dragging.

I don’t want to alarm you, but I waited 6 months to see a neurologist, I was referred in December 2020 didn’t see neurologist till June 2021

Thank you. What medication do you take?

No, only referrals are nerve conduction tests and neurology.

Just to echo what GretaVanFleet said, I had similar to you about 11 years ago, initially brushed off as post pregnancy sciatica, then panic it might be a tumour, and in the end dx as MS. I just wanted to say that there are lots of ways to manage things that are big and scary, I thought my life was over but its not, yes things affect my abilities but there are treatments and you can rearrange your life to work better. Please do keep asking for help from the medics and don't take no for an answer, and keep talking too, as sometimes the thoughts can run away with you and it feels very lonely. Sending lots of love xx

Thanks so much

i suppose when you see your neurologist then you will be referred for mri.

I started on Pramipexole which I still take after 2 years Rasagiline was introduced. A year later my right leg got worse so co-beneldopa was added which has made a huge difference.

Update - panicking again!
So after going to see a private neurologist in July, and being diagnosed with Dystonia, I was prescribed 10mg Propranolol x 2 a day which did nothing so my GP recently increased it to 10mg x 4 day.
A couple of weeks ago, my NHS appointment came through for mid January but today I have had a call from the private Neurologists's secretary saying they have reviewed my MRI (brain) and nerve conduction tests and he wants to see me face to face at a cost of £160. I was told at the time my brain scan and nerve conduction tests were normal but he would get a second opinion but like I say that was in July!
I explained to the secretary I am due to see an NHS Neurologist in the new year and she said she'd see if the private neurologist can write a letter but now I am sat here worrying why he wants to see me? The only thing I can think is they struggled to get clear images when doing the MRI due to my tremors, and something was missed?
Sorry for posting, not expecting advice just needed to share.

No idea OP...

What I'd do is ask for copies of the mri and test results from the private place and take them with you for the NHS appointment - and tell the.private to write to the NHS neurologist.

Must be a worry.for you !

Be mindful op that private hospitals are firstly a business. I found this out to my cost when I had concerns around breast discharge a few years ago. I had a clear mammogram initially and an ultrasound which cost a lot of money, but put my mind at rest, they then got back in touch and suggested I needed another mammogram within weeks (at a cost of another £200) which they did and dismissed quickly as 'fine'. At the time I was just relieved there was no major issue, but in hindsight realised that this was also a good way of making even more of a profit.

I agree about asking for scans and reports from the private hospital to take with you to your NHS appointment in the new year, but would not return for a face to face meeting with them. All the very best op.