Page 3 | To ask if I should bother paying to see a neurologist?

Numberedout · 2025-10-10T21:22:46+00:00

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

Original poster

Numberedout · 11/10/2025 17:43

BarbaricYawp · 11/10/2025 14:31

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.

I'm sorry to hear that you had to struggle too to get a diagnosis. Hope your doing well now.

I was plodding along with the ME CFS diagnosis. But there's new symptoms that arise which get put down to the ME CFS and it's not making sense to me any more.I'm so fed up with myself TBH.

Working full time, teenage DC, and trying to keep up with everything whilst I'm in pain and exhausted.

I'm tired of being ill. Every new symptom is put down to anxiety or something similar. I then try and do self care but the symptoms are still there.

Then there is the feeling of being a burden on your family because you need to lie down whenever you get a chance to. Or because you are always ill/tired.

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dizzydizzydizzy · 11/10/2025 17:44

Numberedout · 11/10/2025 17:33

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.

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Have you tried taking magnesium?

I had some of the symptoms you describe. Some of them disappeared after I started taking magnesium and some just went, so I assumed it was ME/CFS playing up.

Original poster

Numberedout · 11/10/2025 17:50

dizzydizzydizzy · 11/10/2025 17:44

Have you tried taking magnesium?

I had some of the symptoms you describe. Some of them disappeared after I started taking magnesium and some just went, so I assumed it was ME/CFS playing up.

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I use Epsom salt in the bath which is magnesium I think and have taken the supplements too in the past. That does help with the pain but not the electric shocks or spasms.

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Original poster

Numberedout · 11/10/2025 17:50

Maybe it's perimenapause. Who knows.

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ThatGladTiger · 11/10/2025 17:52

The £250 will be the cost of the initial consultation, no tests at all. Tests will cost thousands. Unless you are willing to see it through privately you are not going to get anything from 30 mins with a private doctor. I’d persist with your GP!

dizzydizzydizzy · 11/10/2025 17:53

Numberedout · 11/10/2025 17:50

I use Epsom salt in the bath which is magnesium I think and have taken the supplements too in the past. That does help with the pain but not the electric shocks or spasms.

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Well perhaps try taking some magnesium tablets as well to see it that helps. Apparently most people in the UK are deficient. I’m pretty sure I had muscle spasms before starting on magnesium.

Original poster

Numberedout · 11/10/2025 18:02

ThatGladTiger · 11/10/2025 17:52

The £250 will be the cost of the initial consultation, no tests at all. Tests will cost thousands. Unless you are willing to see it through privately you are not going to get anything from 30 mins with a private doctor. I’d persist with your GP!

That seems like the sensible option!

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BarbaricYawp · 11/10/2025 19:13

I would be wary of putting this down to "just perimenopause". Conventional western medicine is steeped in misogyny for starters, but also what you describe really doesn't seem normal to me. You need answers. I recognise only too well the boredom with yourself that you describe, and the sense that you need to up the self-care and are basically responsible for your own wellness. I was offered nothing but antidepressants for two years, and despite knowing full well that what I had definitely was not depression I ended up wondering what was wrong with me psychologically that I seemed to be so invested in not being well - kind of an internalised victim-blaming, if you like. The utter relief of discovering that I had an actual thing that could be identified and treated - and could have been all along - was transformative, but I was also very angry about all the fobbing off and you should be too (if you only had the energy!). No doctor - certainly no GP - should be sending you away with a rather hopeless diagnosis of ME/CFS without really being certain that they've excluded everything else first.

Thank you for asking about me btw: I've been on a long course of steroids and feel like a new person now. My condition is genetic so won't ever go away as such, but will relapse and remit, and can to some extent be improved by monitoring, self-care, and taking a pharmaceutical approach if/when it flares up. Do google sarcoidosis and see if it seems to fit. I was a complete wreck and thought life would never be normal again. Feel free to PM if you want to run symptoms by me, or if you just want to chat. But also if you really believe it's MS then dig your heels in for a referral and at least get on the waiting list.

Original poster

Numberedout · 11/10/2025 20:09

BarbaricYawp · 11/10/2025 19:13

I would be wary of putting this down to "just perimenopause". Conventional western medicine is steeped in misogyny for starters, but also what you describe really doesn't seem normal to me. You need answers. I recognise only too well the boredom with yourself that you describe, and the sense that you need to up the self-care and are basically responsible for your own wellness. I was offered nothing but antidepressants for two years, and despite knowing full well that what I had definitely was not depression I ended up wondering what was wrong with me psychologically that I seemed to be so invested in not being well - kind of an internalised victim-blaming, if you like. The utter relief of discovering that I had an actual thing that could be identified and treated - and could have been all along - was transformative, but I was also very angry about all the fobbing off and you should be too (if you only had the energy!). No doctor - certainly no GP - should be sending you away with a rather hopeless diagnosis of ME/CFS without really being certain that they've excluded everything else first.

Thank you for asking about me btw: I've been on a long course of steroids and feel like a new person now. My condition is genetic so won't ever go away as such, but will relapse and remit, and can to some extent be improved by monitoring, self-care, and taking a pharmaceutical approach if/when it flares up. Do google sarcoidosis and see if it seems to fit. I was a complete wreck and thought life would never be normal again. Feel free to PM if you want to run symptoms by me, or if you just want to chat. But also if you really believe it's MS then dig your heels in for a referral and at least get on the waiting list.

Thank you for your thoughtful reply. It's good to hear that you have improved, even though it's been a journey and a half for you to get there.
Yep, I'm usually too knackered to be angry, to care about the negligence or to chase my GP.
The irony is that my whole working life has been centred around advocating on behalf of those who can't advocate for themselves!

I'm hoping that I can eventually get to a place where you have, where I know exactly why my body is (sort of) failing and what I can do about it.
you totally get the self care thing. Honestly, it used to be a term that used to bring me comfort but now I want to scream when it's advised.

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Original poster

Numberedout · 11/10/2025 20:11

@BarbaricYawp I will look into the condition you have ( that I can't spell right now!)

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ladyamy · 11/10/2025 20:12

Sounds like it could be multiple sclerosis

Hankunamatata · 11/10/2025 20:13

Have you tried HRT. Peri menopause can cause lots of weird issues

Faez · 11/10/2025 20:14

Sounds like when I had thyroid issues

mindutopia · 11/10/2025 20:40

Me personally, I would pursue an NHS referral while simultaneously seeking treatment for your anxiety.

I think if you had TN, you would know. It’s not called the suicide disease for nothing. You’d have been in A&E the very first flare up.

I have had TN like pain in the past very similar to what you are describing. But not as painful as TN would be. It was anxiety. I don’t normally get anxiety or panic attacks. But it built into a full blown panic attack a couple weeks later. Hot flushes, both my arms went numb, I had to lock myself in the bathroom and sit with my numb hands under cold running water for like an hour (oddly that was the only thing that helped the numbness).

Chronic stress can do horrible things to our bodies. It doesn’t mean it’s all in your head. It’s very real. But the route to alleviating symptoms is through dealing with the anxiety. Do that while pursuing a referral to neurology or rheumatology and make sure all your bloods have been done, including vitamin D and are well above deficient. Treat anything borderline as a deficiency.

Original poster

Numberedout · 11/10/2025 20:51

Hankunamatata · 11/10/2025 20:13

Have you tried HRT. Peri menopause can cause lots of weird issues

Not yet

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Original poster

Numberedout · 11/10/2025 20:53

mindutopia · 11/10/2025 20:40

Me personally, I would pursue an NHS referral while simultaneously seeking treatment for your anxiety.

I think if you had TN, you would know. It’s not called the suicide disease for nothing. You’d have been in A&E the very first flare up.

I have had TN like pain in the past very similar to what you are describing. But not as painful as TN would be. It was anxiety. I don’t normally get anxiety or panic attacks. But it built into a full blown panic attack a couple weeks later. Hot flushes, both my arms went numb, I had to lock myself in the bathroom and sit with my numb hands under cold running water for like an hour (oddly that was the only thing that helped the numbness).

Chronic stress can do horrible things to our bodies. It doesn’t mean it’s all in your head. It’s very real. But the route to alleviating symptoms is through dealing with the anxiety. Do that while pursuing a referral to neurology or rheumatology and make sure all your bloods have been done, including vitamin D and are well above deficient. Treat anything borderline as a deficiency.

Did you have a sensation similar to a sharp electric shock in your cheek and eyebrow? Bit like a wire with a faulty current going through your face? I thought that was TN? I may be wrong though

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AudiobookListener · 11/10/2025 20:57

You have been diagnosed with ME/CFS. You have fatigue, PEM and some neurological symptoms. That sounds fairly standard to me. I think you may be overdoing things. Rethink your pacing, get more rest and 45 minutes of really good quality meditation a day and you may find your neurological symptoms gradually improve. Whatever it is, rest, relaxation and avoiding worry will not do it any harm at least.