Convinced I have something severely wrong with me

Not read all the messages sorry (sort of have to read and run), but what tests for B12 did you have exactly? Was it just serum B12, or did you have Active B12, Homocysteine, Methylmalonic Acid?

I ask because Vit B12 deficiency can cause absolutely awful neurological symptoms (numbness, weakness, pins and needles, tinnitus, visual problems etc) as it can damage the coatings on your nerves. And can sometimes be misdiagnosed as MS and other conditions.

There is actually a Functional B12 deficiency, where the B12 they can measure in your blood seems at a normal level, but in actual fact you have a problem getting the B12 from the blood to the cells in different parts of your body, so your body can’t access it. When this happens, you get increasing levels of homocysteine and Methylmalonic acid in your blood. So these are the best markers of whether your body actually has a B12 problem. GPs can’t usually refer for these blood tests (usually has to be referred via a hospital), and there seems to be so little knowledge of what a Functional B12 deficiency is within the medical professions generally.

The good news is that if it is this, then B12 injections can sort you out, but they would need to be very regular. Don’t get B12 injections before you get it all tested, as it would mask any underlying problem you have.

A quick question, are you around perimenopause sort of age? For some reason, B12 deficiency & Functional B12 deficiency seems to get much much worse around perimenopause / menopause…

I am not a medical professional, just someone who has spent the last five years trying to get to the bottom of various worsening neurological / rheumatological problems, and along that journey have found out that I have a Functional B12 deficiency.
Lots of resources online, and super helpful forums (fora?!) eg Health unlocked Pernicious Anaemia and B12 deficiency forum.

Good luck x

Crikey people are mean on here!

OP, I had a terrible feeling something was wrong with me. Ive also hardly ever needed the GP or the NHS.

I got sick one day and just wasn't getting better and everyone kept telling me it was fine when I knew deep down it wasn't. I am also a single parent and although my dc are adults now, one of them has SN and it suddenly really panicked me that he would be left on his own.

What I will say is that, in the end, you can't change the outcome. It is what it is. And I know that doesn't sound very reassuring but ultimately, you end up dealing with whatever life throws at you, just because you have to.

So good luck with your scan. What is scary is the unknown. Once you've had the scan you will feel better, even if it is bad news because at least you will know.

This is very unnecessary, it is very stressful to be waiting for a scan or for scan results.

@Raffaelli this nutritional therapist has MS and says she hasn’t had a relapse since dx because she has managed her diet. I know nothing is confirmed for you but it may be worth having a look at her website to see what she says jic. (I remember her saying to eat massive amounts more of oily fish or veggie alternatives like chia and flax, for the Omega oils (can never remember which we tend to be deficient in but we’re all getting loads of one and almost none of the other).)
https://jennacox.co.uk/

OP I had very similar symptoms to you a few years ago and it was nothing at all. Neurologist thought a virus had probably affected my spine for a bit but no problems since and scans all clear xxx

I’m shocked that your doctor more or less dismissed you. Especially with a family history of MS. As your father is a GP what is his opinion?

Agree that NHS levels for B12, thyroid etc are ridiculous. Where we would be told it's "normal", in many other countries in Europe it would be deemed too low and treatment would be started immediately to raise it. Talking from experience here.

It's a cost saving exercise. Don't take their "normal" for " all is ok" - it may not be and you may have symptoms. If you are anywhere near the lower third end, consider chasing this.

Your vit D is way too low

Sorry you're having such a tough time OP.

I leant many things during breast cancer, and probably the biggest lesson came at the outset - until a doctor tells you you have a brain tumour/cancer/MS/whatever illness it is, you probably don't. The odds of it being nothing are surprisingly in your favour. Don't waste this time cursing your GP for failing to act, don't waste your time with Dr Google or other online stuff, just look after yourself, try not to think about it and most importantly, don't catastrophise. Use this time to be good to yourself and look after yourself. And should they find anything, then not only will a diagnosis be given, but a plan will be made. Save your energy for what's to come.

Wishing you well.

I'm sorry you feel so anxious, OP.

Neurological disorders can be extremely worrying; I have the misfortune to know as I've been living with a medication induced neurological involuntary movement disorder called tardive dyskinesia for nearly a decade now. This happened after I had a head injury and post concussion syndrome which was absolutely horrendous to recover from and gave me a breakdown (hence the off label antipsychotic prescribed for severe insomnia and anxiety).

Anyway,.... my point being, I'd definitely advise being your own advocate, especially when it comes to knowing your body and your symptoms. I saw 5 different neurologists before one confirmed that I had my movement disorder (that I'd self diagnosed), and equally, I saw the GP multiple times before and out of hours A&E doctor told me that I had post concussion syndrome.

However, after saying all this, I think it's also wise to consider the role and impact that hormones can equally have on the brain and CNS, as I know my neurological symptoms certainly become worse with my hormonal fluctuations I'm getting in perimenopause. I didn't realise how intricately linked neurotransmitters like dopamine were to oestrogen, and how much my lower oestrogen is affecting my movement disorder.

I'm sending you a big hug as I know how hard it is living with neurological symptoms. You will be ok, I know you will ❤️