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

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.

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

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.

@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.

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.

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.

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 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.

I would, if you can.

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.

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.

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)?

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.

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)

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

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.

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

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.