Hi everyone!
I was last around in 2019, I was experiencing mainly cognitive issues then, stuff like getting off my bus and not recognising my own road (had a minor panic thinking I’d got off at the wrong stop and was looking for a road sign to tell my husband where to collect me when I realised it was my own road), and a few odd physical sensations like a stabbing pain in my foot, feeling like my leg was wet etc, plus poor balance when doing things like the heel toe walk but not bad in daily life. My B12 was about 130 at that point, so low but not at a point that they were massively excited about treating it. The neurologist wasn’t hugely thorough, she mainly seemed focused on ruling out dementia tbh but she did order MRIs, MRI in Oct 2019 was reported as normal of neck and brain, and lower spine, thoracic spine wasn’t done.
My B12 was tested again in summer 2020 following an incidental finding of irregular heartbeat when I went to donate COVID convalescent plasma and was 105 so I was given oral supplements.
Last summer I started to struggle hugely with fatigue and muscle fasciculations and asked for my B12 to be rechecked and it had dropped to 84 which is really quite low. At that point I started on the loading doses for injections and am now on the 3mthly injections.
However, my issues seem to be worsening by the day, which surprised me given that I had assumed it was all b12 related and that starting the injections would improve things. The GP did some blood tests, everything was ok except low vit D (and slightly raised bilirubin)…so the GP has said she wants me to take a 3mth course of vitamin d and then re-review. I asked if the symptoms I had were due to vitamin d deficiency and she said “no, but let’s try 12 weeks and see where we are”!
Yday after some pretty strong eye spasms I noticed my right eyelid seemed droopier than normal, they’ve been heading south for a few months now but this was suddenly noticeably more, so my GP sent me to a+e who didn’t really do anything since it obviously wasn’t a stroke (I could have told them that!) but they have written to my GP to request a neuro referral. So now I’m awaiting that appt but my friend is under neurology for a different reason and said to expect about a years wait which is reassuring (!). I’m tossing up going for private MRIs of brain and spine just to set my mind at rest but it’s pricey.
My suspicion is that it will turn out to be peripheral neuropathy and just generally b12 related, (though my concern will then be what to do as I know from the experience of many people on a forum I’m on that trying to get more frequent injections can be impossible, which is silly really because the neurological damage from b12 can be irreversible so surely costs the NHS more in the long run).
But as the two conditions have very similar presentations, MS just keeps coming up when I search whatever new symptom I’m experiencing! So I just feel I’d like to rule that out (or in) so I know what I’m dealing with and not let things progress on and on without knowing what condition it is that needs treatment to try and slow things down, if that makes sense?! If it’s b12, great, I’ll do whatever it takes to get more frequent injections, if it’s MS then at least I know what I’m dealing with and can hopefully get some treatment and support as early as possible.
The symptoms I have now, which have been gradually increasing since aug (which makes me query the idea of MS as isn’t that the wrong sort of pattern? Obviously things staying fairly stagnant since a bad period in 2019 fits but would a relapse be 7mths long??) are…
An inability to urinate properly, it starts hesitantly and then is a very weak trickling stream so it takes forever to finish emptying my bladder (got a urology appt next month)
Bowel incontinence (not new tbf, I think this is unrelated and I can blame my eldest son for damaging me during his birth 
), I’m waiting to start a tibial nerve stimulation thing to try and help.
Still got some weird cognitive stuff going on, forgetting how our TV turns on despite having had it 15yrs, looking at the tin opener and not being able to figure out how it worked etc
Fatigue. Seems to come in waves though? It’s not constant but when it hits it’s like moving through treacle, even talking or smiling feels like an effort.
Weird sensations - feeling wet, sunburn, prickles, electric shock feelings, last night there was a feeling like electricity flowing through my small finger which was weird, vibrating sensations, feeling like something is brushing lightly against my skin like a thread, or that an insect is crawling under my skin, sudden random itchiness that can’t be alleviated so I end up with little scabs where I’ve scratched so hard, the feeling that my blood supply is cut off (you know if you had an elastic band tightly round your wrist and you’d forgotten it was there, the feeling it would cause in your hand after a while…it’s like that but when I look to see if I’ve put my hairband round my wrist there’s nothing. I get it in my fingers too and keep taking my wedding rings off thinking they’re causing it but they aren’t).
Loads of muscle twitches - legs, arms, buttocks, shoulder, one really weird day it was in my abdomen but it felt more like it was in the muscle of the actual organ, eyes (loads), lips, nose, and stronger spasms in my eyes that cause them to nearly close.
Pins and needles in weird places like my shins and ankles and hip and face and wrist…the tingly sort.
The less tingly sort of pins and needles, the numbish feeling when you feel the need to hang your arm down to let the blood flow back in, almost constantly in my hands and feet.
Slightly reduced sensation in fingertips etc and parts of my thigh (reduced sensation for temperature and that tickly feeling when something touches you lightly).
Tinnitus (pulsatile not the ringing type), on and off.
One restless leg!
Occasionally that jerk like you would do as you’re dropping off to sleep, but whilst awake.
A weird jelly leg feeling, often starts with numbness but then feels more like that weird cringey wobbly sensation you get when your reflex is hit.
Finger tremor.
Finding fine motor stuff slightly harder, like writing, it doesn’t look much different but the pen just feels that bit harder to control, as if I’m holding it further up, harder to aim my finger at the right bit on the phone screen etc
Stumbling over my words a bit when I read aloud.
Balance very poor when it’s dark or my eyes are closed (I remembered doing that at the neurologist before so I tested myself!) or heel to toe walking, otherwise not awful, not great but not falling over bad, just the kind of minor thing where you start to stand and fall back down onto the sofa again, or touch the wall as you go by to readjust your balance without even thinking about it
Possible my muscles are weaker and stiffer but also possible I’m just really unfit 
(like climbing over a lowish fence, one leg went over and then I had to lift the other over, walking fast causes painful cramp type feelings, calf muscles are stiff constantly, that kinda thing).
Don’t know what I’m looking for really, any similar experiences, anyone with any of the same symptoms and whether you’ve been diagnosed or not…in all honestly I’d love to know if any of my symptoms are more specific to MS just to be able to know what I’m dealing with but I think almost all of them could be either b12 or MS. I did think recently maybe I had mild optic neuritis as my actual eyes ache, esp the right one, not a headache, just my actual eyes, but nope, the scan at Specsavers showed a healthy optic nerve so no closer to differentiating the two conditions. Are there any symptoms that don’t sound MS related at all? I keep reading stuff like muscle fasciculations not being a symptom but then I read people’s experiences who have been diagnosed and it seems to be a common thing, same with a lot of this stuff.
For those with a diagnosis, is it common for it to be…I won’t say mild because it’s bothering me a lot, but I’m still working, I’ve not had an acute event like my whole body going numb and needing urgent care (other than the eyelid thing which baffled them but they didn’t see as an urgent thing as it obviously wasn’t a stroke or similar). So that is also making me.query it, it seems.so.many people who are diagnosed have stories like “one day my body went numb from the feet and it started to creep upwards” or optic neuritis or other things that you literally couldn’t work through…is everyone’s experience this dramatic or can it be a whole host or more minor, but very “present” issues?
Anyone else been for private scans? Any experiences? How long was your wait for an NHS neurology appt?
I don’t like the limbo . I like to know what I’m dealing with. I assume based on my history of low b12 and the lack of MS specific symptoms that b12 deficiency is more likely and yet it doesn’t add up why it would have continued to worsen despite starting the injections so I’m not sure.
Thank you for any insight and for anyone who actually read all that, here’s a medal because you deserve it 
