Working towards discovering what's going on

[JRL74]

Hello everyone. Apologies for what I feel will be a long post. I’m getting a lot of thoughts out here and hoping in doing so that it all makes sense.

It’s only looking back that I realise how long what could actually be symptoms have been going on and I just got used to them and lived with them.

I’m 36 now. From my early 20s I was experiencing what I would describe as pins and needles / tingling in my hands / arms, feet and legs. I could be at work or at home just on the sofa and my legs would involuntarily shake. Primarily my left leg would be vibrating - other people would notice and I’d just laugh it off and ignore it. There was never any logic as to when it happen or something potentially causing it. It might happen for a few weeks at a time and then nothing for a period.

Over the years there have been little things like my hand tremoring. It can come and go, but I could be trying to do something specific (lets say changing a light bulb) and as I go to do it, the tremor becomes very obvious. It looks like I have severe anxiety to someone watching! It’s always felt a bit embarrassing tbh. Things I kind of overlooked such as lying in bed and I’d sudden feel my leg seize up and stretch out. It would go away after a couple of minutes, so I’d just write it off as a kind of normal muscle spasm that just happens.

I’m very prone to pins and needles over the last few years. It’s been something I just got used to and, again, quietly lived with. My hands especially can feel tingly a majority of the day. It can make the odd task difficult, but I simply pushed through those elements of things I now realise could be symptoms.

This brings me to more recently. In February, alongside a particularly bad week of pins and needles in my arms, I was having what I thought was major chest pains. With big family history of cardio issues, I very much assumed this was basically my turn. I went to casualty and had checks, but everything was fine. Bloods apparently were ‘perfect’ etc. No body followed up with me about pins and needles etc.

I’ve had a stressful 2025. The last couple of weeks everything kind of came to a head with symptoms, I wasn’t able to ignore the general fatigue (which I have done before), the pins and neeldes sensations feeling so much worse but also accompanied by overall body pain. I feel decades older than I am! Hobbling on sore feet, aching muscles etc. I’ve got the same sensations in chest that I had in February. It’s very uncomfortable - but honestly, a relief I wasn’t having a heart attack. I’ve been monitoring my BP at home and it has been consistently higher than it normally would be, which in fairness, was understandable as I know I’ve been stressed.

I bit the bullet and went to my GP last week. He has me doing BP readings for a week and did a full bloods investigation. I know I’ve perhaps gone ahead of him in fearing that all of this could be MS and jumping the gun, but I felt like knowing more myself going into this was sensible. And it at least gave me an understanding of what might be going on.

My blood results have all been marked normal. However, I did notice that both my B12 and folate results are pretty borderline low, even if still in the so-called ‘normal range’. From reading, it seems this could be giving symptoms that mimic MS. Has anyone had similar experiences with this?

I’ll be going back to my GP in a few days once the 7 days of monitoring blood pressure are done. He may focus on those two results or might just see them marked normal and not. In the meantime, I have bought supplements to try and increase both and see if that helps.

A lot of things and these symptoms feel like they’ve been going on years, so I don’t to ‘get my hopes up’ that this is simply a B12 issue either. So much from the last decade made kind of sense to me once I learned more about MS too, as I was very ignorant to a lot of the details. Part of me wants to book a private head MRI just to see if there’s anything there. If it’s clear, I can perhaps relax and focus on the supplements.

So yeah, that’s where I am at right now. My head is filled with information and I’m trying to process it all with different scenarios. I don’t want to go into GP specifically saying MS as I worry he’ll think I’m self-diagnosing. I’m intrigued to see what he suggests as the next step.

Sorry for this long ramble. It feels a little therapeutic to actually write something down and hopefully have it make sense to people have been on this journey.

[Leonora]

You’ve done a very good job of setting out your symptoms here.

As you’ve perhaps realised, symptoms that could be MS can often be lots of other things, too. You mentioned B12 deficiency. There are other potential causes of pins and needles - I think I was checked for diabetes, for example. And then you have some symptoms are not so MS-like.

It does sound like you have a diligent GP who is trying to investigate. So why not raise your concerns with the GP? You are right, they don’t like people who self-diagnose, get fixated on something and then won’t listen to other possibilities. Even a GP can’t, on their own, diagnose MS. But all GPs know we look at the internet… let’s be realistic here, we all do it!

So perhaps you could just be open with them. Take in your list of previous symptoms - perhaps print out your post here if that helps. You could then just ask, could this be MS? Should I be referred to a neurologist? If so, best to get on with it because the whole process of referrals, MRI scans etc. takes some time. There are also lots of other neurological conditions, apart from MS, that cause similar symptoms - so it’s not a simple diagnosis even for neurologists.

On the issue of a private MRI, you could do that to try to move things forward, but they are quite expensive! You’d need to know whether to scan brain and spinal cord, or just brain. Whether to use contrast, or not. Most places will want a referral letter - at least from a GP. Then you need to ask whether the price includes just the scan, or also a scan plus a neuroradiologist to interpret it. Whereas if you go via a neurologist, the scan should be seen by a neuroradiologist who then reports to a neurologist.

And then one little point on the logistics: If you have a private scan, I’d be sure to take something with you - CD or whatever they need - to put it on. Otherwise it can be rather hard to get your scan transferred to an NHS hospital system.

Anyway, if your GP is helpful, I’d suggest that is your first port of call: Could this be MS? If they say, no, then why not? What is their thinking?

[Hank_Dogs]

As @Leonora and yourself say - don’t go to the GP saying I’ve got ms but there is absolutely no harm done in saying that you are worried that it could be MS ( or come to that , signs of diabetes, or something completely different)

Depends a bit on your GP - before diagnosis when I had various tingling like feelings across my face my GP did ask me what do you think they might be caused by so I said possibly MS, possibly some sort of Palsy .her reply was yes it could be MS but let’s keep and eye on things for a while