To ask if I should bother paying to see a neurologist?

[Numberedout]

After some advice before I pay £250 for half an hour with a neurologist. (NHS waiting list is long)

So I have health anxiety so I don't trust my judgement at the moment.

For the last few years I have had

Leg cramps
Sciatica
Burning in hands and feet
Muscle twitching all over my body
Blurred vision
Muscular pain all over
Spasms in my legs

I have put the symptoms down to anxiety and perimenapause and not bothered with them too much.

However, for a few months I have been getting electric shocks in my right side of the face. They happen occasionally, when I smile or eat. It's excruciating. It's likely trigeminal neuralgia according to the internet.

So my question is would it be worth seeing a neurologist to rule something more sinister out or it likely the TN has come on due to stress?

Anyone with MS or similar sharing their experience would be very appreciated.

TIA

What happens before your vision blurs?

Have you seen your GP? Sorry if that’s a daft question but it would be helpful to know what they have said if so. If they had concerns it was something sinister then they would expedite a referral.

I would if I could afford it.

if I could afford it by going without luxuries, but not if it meant not paying bills.

Yes! I do not have MS experience but do have experience of NHS neurology waiting lists - they are really long and the chances are that you could spend the next 18 months worrying completely unnecessarily while not actually progressing with solving what sounds like a very uncomfortable issue (because you are waiting).

I wondered also- have you seen the GP? (I assume so if you are on the neurology waiting list). Have they done blood tests- not for anything sinister but eg for thyroid issues? Have you seen a physiotherapist - ideally one who also works in the NHS on spinal issues?

Reading your symptoms, I think that it would be worthwhile seeing a neurologist. You could speak to your GP first, if you haven't already done so. At least you could get some peace of mind.

@NewtonsCradle nothing significant. When iv been looking down at something and look up it's blurry. TBH it's always like that. Have been checked at opticians, everything is ok.

@LifeOfAShowgirl13 yes iv spoken to the GP about my symptoms. He suggested ME CFS. No mention of a neurologist referral.

What has your GP said?

Sounds like fibromyalgia

@FutureMarchionessOfVidal yes I have had bloods and ferritin was pretty low but im taking supplements for that.

Have you had bloods done, could be low ferritin? Vitamin definciencies or perimenopause. Lots of things cause those symptoms. If you are worried, push your GP for referral

I’ve got MS. Before you pay to see a neurologist I would get the GP to check your vitamin B12 levels & folate levels. Then check the results yourself to ensure your levels are not near the bottom of the range. If in range Dr will say your fine. Low B12, folate & ferritin can cause the symptoms your experiencing, unfortunately the medical profession are not well versed in vitamin B12 deficiency despite how debilitating it is

I paid to see a private neurologist. It was worth it, BUT I’d already had MRIs and numerous other tests done on the NHS. The one off consultant cost was one I could manage, but it would have run into thousands of pounds to have all the tests done privately.
To see a private neurologist, you still need a GP referral letter.

@Zeborah my ferritin is 26 so very low. B12 and folate was fine but I will double check that.

i have MS.

I was fortunate that I was diagnosed very quickly after presenting at an urgent care centre with numbness on the skin of my legs. I then started to develop a zapping feeling down my spine when I looked down. I was admitted to hospital and they did an mri. I was diagnosed the next day with relapsing remitting MS.

MS is notorious for being missed or misdiagnosed. The symptoms are varied and can often be mistaken for other things. Your symptoms are things which could arise from MS but they could be due to many other things too I would think.

do you have periods of tine when your symptoms are better and periods of tine when they are worse?

a neurologist won’t be able to diagnose you with MS without an MRI (they may also want to do a lumber puncture). Unfortunately the MRI will be expensive I would think.

Your symptoms sound serious enough (in terms of how they are affecting your life) that I would pay for a private consultation to try and get some answers if I could afford it.

Ok but never trust a Dr’s fine

@GooseOnMyGrave do you mind if I ask what the outcome for you was as well as what symptoms you had.

I had a lot of symptoms very similar to yours at a similar time in my life and did see a neurologist and was tested for MS and other things. I had many many tests, all of which were negative which increased my health anxiety and my symptoms got worse. When I addressed the stress, over months my symptoms calmed and mostly went. The neurologist did various tests on things like balance and pushing and pulling.

Symptoms similar to yours. I’ve been recently diagnosed with MS

@Ibetthatyoulookgoodon thanks for sharing. The numbness on your skin that you speak of is a common symptom and because I don't have that or the limping that many have , I never thought of pursuing a diagnosis.
The shocks in my face however just seem so organic, as well as painful so I'm seriously considering the neurologist appointment.
I suppose even if it turns out to something like FND or a psychosomatic disorder (as I have been told that's what it is previously) it will put my mind to rest a bit and I can concentrate on dealing with the symptoms individually.

@Ibetthatyoulookgoodon the pain and burning is always there but I have respite from the electric shocks and spasms

@GooseOnMyGrave I'm sorry to hear that. I hope your managing ok 🌷

Can you go for acupuncture? It can fix things that western medicine cannot.

In the meantime your issues could be caused by the things that blood tests showed are lacking and that your taking supplements for. They can take a month to kick in. So after that yes I’d go to a neurologist - but I’d wait just now if it’s under a month in case the supplements sort it.

GPs can diagnose and treat trigeminal neuralgia (I'm a GP and have done so). Does your GP think it's TN?

I have had acupuncture in the past and didn't feel that it worked for me. This was years ago.