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

You don’t always need a referral from a gp for a private appt, depends on the doctor, lots don’t.
I’d go for it as long as it wouldn’t put you in debt, but also have a think about what if they recommend various tests, could you pay for them (and would you want too)

Yes he does. The reason I think seeing a neurologist may be an option is because the TN symptoms are on top of so many neurological types of symptoms iv had for years and am worried about what my body is going to display next.

I agree it may be TN but perhaps it's a secondary condition to something else? I just don't know.

My DD has MS, formally diagnosed at 17 (she’s 20 now) but had issues for years before. She had severe migraines and unexplained shoulder pain that would radiate down her arm, other pains in her body, and she was a bit clumsy, from the age of 13. It took three visits to her GP and two to A&E before I got a referral. The MRI was scheduled six months away so I went private to get one sooner (that was an ordeal in itself). Anyway £650 including meeting with the private doctor which didn’t show anything. She just prescribed a very strong painkiller to deal with the migraines (they didn’t work), and said to have the NHS scan too. Also showed nothing. Various other tests. I believe the consultant did mention MS at one point but said she was so young. We tried other things: physiotherapist, acupuncture, chiropractor. Then I think she learned to tolerate the pain to an extent (how sad it that).
Then at 17 her arm felt dead. The next day her leg was affected. She called 111 and they sent her to A&E (different hospital than before). She was given a high contrast mri the next day and they saw lesions, but they had to do a lumbar puncture and blood test to confirm it.
So her symptoms were different to yours but MS can present itself in many ways. And of course they have to eliminate any other cause as there’s no one test for it. If you do go private make sure they do a high contrast MRI (if they think that’s what you need). Hope you get a better result.

What is your financial situation? What happens if you fork out the £250 and the neurologist wants to refer you for MRIs or something? Can you afford those? If you can’t, can you find out what would happen? Would having the private neurologist at least bump you up the waiting list (as you could go straight to whatever the next stage is rather than start at the seeing the consultant stage)?

The only thing I would say is if you can only afford half an hour. It isn't enough time for a neurologist to complete a full history and examination then order tests you'd have to pay for, then come back for results and ongoing care. I think you would go away with a lot more unanswered questions.

@mondaytosunday Thanks for sharing. That's awful. Poor thing, she went through so much so unnecessarily. It's a good job you were there to advocate for her and get her the care she needed. I hope she's doing much better.

I will bear the high contrast MRI in mind if I end up going down that route. I am at a stage now where I need answers and to be looked at in more depth.

Yes having a consultation would bump up any MRI checks on the NHS (so I have been told) I couldn't afford any further tests privately @RedwallMattimeo

A private consultant appointment without any scans or test results to talk over would be a bit of a waste of money IMO. I’d want an MRI at least first. Push a bit harder for NHS referrals via your GP first.

It won’t bump up your MRI referrals, you’ll just be on the NHS waiting list like everyone else.

I would, if you can.

My first thought was low B12. Sadly some doctors don’t really grasp the importance of treating low B12 when it’s “normal range” to them 😩

I would definitely push for a neurology referral.

some people experience numbness but many don’t. I don’t have any limping. It really depends where your lesions occur and how severe they are. A lesion it a little bit of damage to your brain, spine or optic nerve. I have about 10 small lesions in my brain that never gave me any symptoms (seen in the mri) and one on my spine which gave me the numbness and the neck zapping thing and lead to diagnosis. If you have RRMS (the most common type) it would be normal to have periods of being ‘better’ and periods of being worse.

you may well not have MS but just to say I got diagnosed in 2017, had some treatment and I’ve not had another relapse since. My symptoms have gone and if I didnt know I had MS, I wouldn’t know iyswim.

good luck getting some answers xx

My first thought was Lyme disease.
Boy at DDs school had similar symptoms to electric shocks down face and was Lyme.
I would definitely pay for consultation and if you have ever had a tick- mention it, or even if you haven't it may be worth asking for a test.

What an ordeal for you all. I often feel blessed to have been diagnosed quickly when I hear other people’s stories (which are often more like your daughters). How is she doing now? I was also diagnosed in 2017 and I was quickly treated with Lemtrada which has worked really well for me.

@IbetthatyoulookgoodonI’ve also got it. I’m glad you mentioned that zapping feeling when you look down as I’ve just started having that. Wasn’t sure if it was the MS or my imagination. Think I’ve relapsed after years of stability.

Many labs now measure ‘active B12’, rather than the old total B12. Total B12 measured both active and inactive forms, which was why some folk were deficient with normal levels. Hopefully this will now be thing of the past. Worth checking if it’s an ‘active B12’ result- it will say on the result.

I've seen your post where you have said b12 was fine but could it perhaps be on the low side of normal? Those are all the symptoms I get with my b12 deficiency

I have ms and tn. If you are on a limited budget I would ask your gp to refer you for an mri with contrast. That will rule a lot of things in or out. If anything shows up you will get to see a neurologist quicker.

Previously, I have asked for an MRI, this was before the TN like symptoms but he refused. Said that neurologists are fed up of gps referring left right and centre. Ridiculous I know. So I'm looking to go private instead. I may go straight for an MRI I think and then take the results to my GP.
I can afford to pay for one test/consultation.

Don’t do this. Do you know what you’re requesting and why? Is MRI the most appropriate test? What other tests are needed? The GP isn’t a neurologist and so may not be able to interpret the MRI, bearing in mind almost every MRI will identify an ‘abnormality’ of some kind - it is the interpretation of it that’s important/valuable.

I would pay to see the neurologist and if they think further investigation is needed you can take their letter to the GP and ask for an NHS referral to a neurologist to discuss the recommendations further. You’re unlikely to be fast tracked, and it’s very likely the NHS neurologist will want to do their own initial assessment and may even disagree with the private neurologist, but this way but you will at least get the referral.

Interesting. I'll have a think 🤔 now I can see why having lots of money can make life so much easier! How frustrating! I know the NHS is stretched, a NHS neurologist waitlist is 18 months in our area.

Im sorry to hear that. Yes it’s called Lhermitte's sign. There’s a fair bit of info about the sensation online.

Does your gp think that you need a neurologist to review you?
What investigations have you already had or would you basically be starting from scratch with the private neurologist? If they advised an MRI and further tests for example (and assuming you haven't had them) , do you easily have the funds to pay for these privately too? Or would you then expect the nhs to do this and put you to the top of the list ( they may well not do that). If the neurologist said you don't need any further investigations, would you accept that or be seeking another opinion. I think I'd be clear in my own mind of what the expectations are, how realistic and the potential cost before paying for anything privately.

I have ME/CFS. The symptoms you describe don't particularly seem like ME/CFS because you haven't mentioned any of the main symptoms.

Do you have fatigue?
Do you have post exertional malaise- so a worsening of symptoms when you overdo it? In ME/CFS overdoing it happens very easily - for example for me it would be walking more than about 500 metres or much less on a bad day or chatting to a group of people in a noisy cafe.
Do you have brain fog?

If the GP does think you have ME/CFS, I would expect them to book you in for a large number of blood tests. If they are normal, they would then refer you to an ME/CFS clinic. There are not many NHS clinics and I have certainly heard that some GPs won't do a referral. Mine did. The clinic was far away but it didn't matter because all the appointments were online.

I had similar symptoms and was worried about MS. I pressed my GP for a neurology referral without success. Eventually things became so extreme I ended up in A&E, who to my surprise ordered a simple chest x-ray (other investigations followed). My diagnosis is systemic sarcoidosis. It's supposed to be very rare but personally I think it's just under-diagnosed. It causes a lot of neuro and eye problems, and also joint, skin and gastric symptoms. Individual disease course varies wildly but almost all sufferers have some lung involvement, hence the chest x-ray. It's an autoimmune inflammation-mediated condition.

Chest x-rays are cheap and quick compared with neuro referrals so perhaps your GP would spring for one for reassurance, unless you've already had a lot of radiation recently. It might also be worth redoing bloods and including things like ACE, ANA and inflammatory markers. Don't accept labels like ME/CFS/fibromyalgia from a GP who goes straight to them without any investigations, which is lazy medicine, and don't go down the complementary route until you know what you're actually treating imho.

If all else fails I would go for the private consultation but I think you still have avenues to explore and would make better use of your money if you exhaust them on the NHS first.

Good luck. It's awful feeling ill and worried about yourself and not being taken seriously.

Yes I have attended a ME CFS clinic a couple of years ago. The fatigue,PEM and pain were my main symptoms. I still pace on a daily basis.