Convinced I have something severely wrong with me

[Raffaelli]

Have posted about this before, last night, before I saw a neurologist. Progressive right sided weakness, shakiness, odd sensations. Leg is heavy. Arm feels odd.

Neurological exam was normal apart from I couldn't lift my leg against force.

Neurologist is getting me in for an MRI as soon as space is available. Said he is concerned about MS or something going on in my cervical spine.

I have managed to convince myself I have a brain tumor or something that is going to be life limiting/ending. I do not suffer with health anxiety and rarely go to the GP. Out of nowhere I am spiralling. I just have a gut feeling.

Bloods taken for vitamin deficiency and thyroid, all normal.

Has anyone ever been convinced there's something seriously amiss and been wrong? Sorry for posting in AIBU, I'm just struggling and don't get much traffic on the health boards.

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.

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?

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

He said go and see a private neurologist and recommended one to me. He was equally as peed off.

@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/

I asked him 'could it be MS?' and he said 'yes it could be and I'd like to rule that out considering your family history' and then asked him what else it could be so he said it's possible there's something like a bulging disc and since it's in my arm and leg it would likely be in my cervical spine. He wants a scan quite fast to rule these and also explained that it's possible it's nothing or I've just had some sort of infection and I'll self heal. Is that really inappropriate? I would've been far more anxious if he told me nothing.

Just live with my 6yo but I have my mum and dad.

I did ask him if there were bigger things I should be worried about. It was part of a 30 min consultation. I didn't just walk in and say 'could this be ms?'. It was part of a whole conversation where I asked if it was bigger things because I was concerned that I have a family history of brain tumors, ms and parkinsons and asked if it could be something like this, could it be MS as that is the first thing that came to mind. He was clear that the main things he was worried about were ms and an issue with my cervical spine, and he wanted to rule these out. I have seen two of my family members go through a diagnosis and I'm extremely anxious so don't think it's fair to pick me apart.

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

I've just read through my posts and they really just show that I'm very anxious due to having a limb that isn't functioning properly and am waiting for a scan. I don't think I'm spiralling but more trying to manage some severe anxiety over the next 2-4 weeks whilst I wait for a scan. It's really horrible when your body goes wrong. I'm still being a good mum and working 40 hours a week just fine, just wanted to know how others have been in similar situations. Some posts on here have been lovely and very helpful.

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.

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

Yes this is a very reassuring post op.

Firstly it may be something quite different from what you fear, and less alarming.

But secondly, people can and do get successfully treated. So once you’ve been through all those possibilities, the chance of a terrible outcome is getting very small.

I do understand with a 6 up how you would feel worried though.

Chin up and fingers crossed for now. Keep posting if you need an outlet, and don’t Google! X

But also op “ bad news” is good news in the sense that it enables the beginning of treatment. You have to think of it that way .

I did mean it in a reassuring way (I hope it came across that way!). I’m not a worrier AT ALL (in fact I should probably worry more!) but I did obviously get a diagnosis I wasn’t expecting.

Just because you worry it doesn’t mean something is bad is more likely to happen - worrying and outcomes are unrelated!

It’s 3 we get very little of and 6 we get loads of im pretty sure!

Salmon, linseed and oats are a good source of the 3’s