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?

Hi, sorry to hear about what you're going through. It must be very worrying for you, do you have anyone to talk to about it in real life? I'm sure you don't want to trouble your mum but it's not good to bottle up either when you're anxious.

I'm glad the MRI was able to rule out a tumor and hopefully whatever the rest of your results/neurologist says, you can get on the right treatment/management path. It's good that they're taking it seriously yet I understand this can also make you more worried.

I don't have any practical advice but wanted to suggest you post this in the general health board where you may get more useful replies.

It would be worth trying to establish how long the wait for the NHS neurologist will be before deciding to go private. Did the GP give you worst case scenario? If you go down that route is there a local Facebook group you can use to ask for recommendations? Or work your way through the list of consultants on your local private hospital website maybe? You must be really worried you have my sympathy. You will need to be a little patience to work through the tests and hopefully cross things off the list as you go.

It could be the medication, if we dont want to jump to the worse case scenario like Parkinsons. Heavy medication can cause all sorts of problems. I have been on epilepsy medication (plus a benzo) since I was a teenager and the medication has caused hand tremors from time to time especially if I write fast and I also twitch from time to time. Sometimes I struggle to hold a pen to write, especially if I am stressed. The epilepsy medication I am can also cause liver damager (thankfully that is yet to happen). Obviously I have not experienced all the symptons you are reffering to but medication does odd things to your body.

Just speaking from my own experience of being diagnosed with a neurological condition. This was in New Zealand so it might be different on the NHS but through my epilepsy diagnosis all the tests etc could be achieved through outpatients / GP. I got every test under the sun without laying eyes on an neurologist. Then I sat down with my neurologist where we worked out medication, how to manage my epilepsy etc.

I would ask your GP if there is any other further tests you could undergo? The other avenue you could ask whether it would be worth exploring is having an EEG. EEG measures your brainwaves, which is how I was diagnosed with epilepsy. NOT saying it is epilepsy, but it could discover other issues with your brain, its worth asking about your GP.

If you are undergoing further tests I would hold off before seeing a neurologist because a neurologist is probably more likely to be able to discover a way forward after any sort of diagonsis, but also it gives you some times to see whether this current medication is causing problems. Obviously if your symptons get worse then I would recommend going private.

I paid for a private consultant neurologist, the first appointment was over the phone during the pandemic, he then got me straight in his NHS clinic. I had the scans within a couple of weeks, it cost me £150. My GP told me I would be waiting up to 2 years to see one on the NHS.

Thanks for the replies. I am very lucky I have a supportive husband who is being a rock. We have decided to give it a few weeks for the prochlorperazine to get out of my system and see if things improve. If they don't we will try and go private. The GP said even with an urgent referral it could be a 6-7 month wait and I can't wait that long. Thanks again

Not sure I agree that an EEG would be useful. The list of conditions that the GP has mentioned would not show up in an EEG and there is no indication that epilepsy is suspected.

The neurologist would need to see the test results in order to make any sort of diagnosis (MRI, nerve conduction, blood tests). He/she will probably also carry out some basic reflex tests in the office. So if you go private you might wind up having to pay to have all the tests done privately as well as the consultation. Or you could have the tests on the NHS (if the timescale is reasonable) and then take the results to a private neurologist consultation.

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.

The unknown is scary I think anyone would feel the same. When was the MRI and was this private or NHS? If private will the NHS order another one in January? Just trying to guage how long you will have to wait if going down NHS route.

Sorry you are going through a stressful time 🤗

Is there anyway, you could do the private appt? You will be worried sick otherwise, it sounds like he has something to tell you.

Tbh £160 sounds very reasonable to me for a consultation with a Neuro, had a private dx 10 years ago, then the cost was £250 for consultation with examination £220 just for consultation, my MRI’s were £850 I think. The Neuro I saw privately for dx then took me as a patient on his NHS list. There are huge delays under NHS for Neurology.

If you decide to take the private appt, take your partner with you, my Neuro insisted my DH came in with me, he was going to stay with our very young children, as we had no one to look after them, Neuro asked a nurse to look after them, while he came into the appt with me. I was given some life changing news, I was in shock, so I was pleased DH was there to listen.

I wish you well, good luck OP.

Try not to worry to much, neurological problems are a well known symptom of B12 deficiency.

Thanks for the replies. The MRI was NHS in June and I was told by the GP and Private Neurologist it was normal, although he did say he would get a second opinion.
My husband said we should just pay for the private consultation as I will worry myself sick otherwise.
Roselilly36, do you mind me asking what your diagnosis is please? No worries if you don't want to say.
Thanks again

@hlc123 I was dx with Transverse Myelitis, but Neurologist was pretty sure it I had Multiple Sclerosis, as I had two areas of inflammation in my spinal cord and white matter lesions on my brain, he assigned me a MS Nurse Specialist, who was fab and helped me so much. The Neuro was correct, I had another relapse two years later, saw Neuro privately again, had more MRI and examination a further lesion was found in the Peduncle (Brain) that confirmed the MS diagnosis.

Good luck 🤞