What could be causing these many weird neurological symptoms!

[CreatingHavoc]

I currently have a constant tingling sensation in my face, throat and nose mainly but also arms and legs to. I keep getting full body tingles as well, as if I suddenly get goosebumps out of nowhere. I keep getting a weird sensation of heat, almost like warm water, on the top of my left foot which passes after a few seconds but is happening probably a few times a hour. I also feel very itchy but not in the normal sense, it's like a nerve thing. I keep getting odd sensations of something being inside my nose and weirdly between my lower labia too but there's nothing there.
I am also getting internal tremors every night and have been for a while, I don't normally notice them until I stop doing stuff and try to relax and suddenly there's this internal vibration/shaking. It's so odd. I also have joint pain in my fingers and my right knee. Regular palpitations. Muscle twitches. Feeling generally quite spaced out even my vision seems odd. Also been having long term problems with swallowing food, where it goes up and gets stuck behind my nasal cavity instead of going down. Waiting for results of a barium swallow. No idea what's going on but can't get a gp appointment till next Thurs 😣 I do have low iron but it's at 17 which is up from 9 so is improving with supplements so I don't think it's related to that. I'm wondering if it's perimenopause or something more sinister like MS. Although I've had some problems with a trapped nerve in my arms a few months back where it went sort of dead so the gp assessed for MS and said it was unlikely. I don't know whether to call back and ask for urgent appointment as I feel really weird.

oh I had all these and the final diagnosis is fibromyalgia

I've had all these symptoms and I went to the doctor and basically told him I have MS. I had a full neurological exam and blood tests. Everything came back normal. I don't know what it was. These symptoms have been coming and going for years. I'm aware they could be anxiety related. It makes sense when you think about how anxiety affects the nervous system. Sometimes I get them and don't think I'm anxious at all but then realise they do kind of coincide with very busy periods in my life so maybe I'm stressed without realising it. I've noticed before that the symptoms sometimes die down during a relaxing time such as a holiday or those first weeks of covid lockdown when life slowed down. It was like my body and mind relaxed and the symptoms went away. I also wouldn't be at all surprised if I had fybromalgia. I'm also perimenopausal.

Have you posted about these symptoms a few times recently? I'm wary of contributing to someone's health anxiety, but I have a neurological condition which can affect swallowing, strength and vision. Although a lot of your other symptoms don't fit with it, for me my initial symptoms were to do with the sort of thing you describe with swallowing and a similar dead arm thing which led me a merry dance round various medical professionals who thought it was some sort of trapped nerve situation.

Anyway, the condition is called Myasthenia Gravis. It's rare, so it's unlikely you have it but it's also unlikely to be something your GP thinks of either.

@mistermagpie I've heard of that and have questioned it before but like you said, not sure it fits. I do have several eye issues, including one slightly droopy eyelid but it occurred directly after surgery for a detatched retina, which can happen apparently. I don't have double vision, more like my vision sort of shakes shakes and I feel mentally detatched from stuff, derealisation type thing. I do have cataracts though and have had surgery in one eye, which is probably partly the cause of the wobbly vision.
When I had the dead arm thing the Dr said there was no actual loss of strength and it was likely either a trapped nerve or a migraine, hopefully they were right. I do feel generally weaker recently but I have had several assessments for strength and coordination, which have all been fine.
The swallowing thing is really frustrating as it seems to get lumped in with the fact that I have a hiatus hernia, which is possibly the cause but glad I'm having further investigations anyway.
How did you manage to get diagnosed with it and who diagnosed you?

Hypocalcaemia can cause a lot of those symptoms

I don't have any vision or eye problems, which in itself is rare for MG but most people who do report drooping lids and double vision. Your tingly symptoms don't really fit either. The swallowing thing is really common though. How is your speech?

I have no loss of strength as such, the weakness comes from the messages not getting through rather than there being anything wrong with my muscles.

I ended up being referred to a neurologist by my GP, but it took a very long time (several years) to get to that point as the weakness and the swallowing/speech problems were all treated as separate problems. In the end they suspected MS and so did I. Luckily the neurologist was on the ball and tested me for MG and within a week I had a diagnosis.

There are a lot of weird and random neurological conditions out there, it's really hard to get diagnosed and the symptoms can be quite odd and upsetting, so I feel your pain.

There are a whole load of autoimmune conditions that cause neurological symptoms e.g. Sjogren's syndrome, Lupus and you can actually have the neuro issues before the others. It can be incredibly hard to get to the bottom of neurological issues though and a good percentage never get diagnosed (and sometimes resolve).

Different types of vasculitis could contribute to most of these symptoms, you'd need a rheum referral and at the least a vast amount of bloods and a ct scan. It could of course be a lot of other things, autoimmune or neurological. Imo fibromyalgia shouldn't be given as a diagnosis before everything else has been ruled out but it seems to be a go to atm.

CreatingHavoc
Sorry to hear you are experiencing these worrying symptoms. I can't be much help except to say I keep getting these sudden electric shock spasms in one finger. It's always the same one and I never know when it's going to happen next. It's like a shock which runs through my body from my finger. It's definitely not muscular. It's really painful. I know it's nothing like you're getting. It's just a pp mentioned sudden weird symptoms in peri menopause and I am in that now so yeah, weird it's suddenly started.
I hooe you get some answers and relief soon.

You mentioned that your iron was low, have you had your B12 tested?
My B12 deficiency had started to cause neurological symptoms. It wasn’t on my radar at all!

@mistermagpie my speech did go a bit off last night while reading my daughter her bedtime story. Like my mouth couldn't quite form some words properly or I'd get my words muddled up. Didn't last long though,think it's ok now. Everything seems worse at the end of the day.

@WorriedMillie I'm going to ask the gp when b12 was last tested I think as I've been wondering about that too.

@melmonroe that's something I've not heard of. I'll have to push for referrals I think.

Hi Op,

I was going to say that you should ask your GP to check your B12.

I wasn't able to move one of my arms and was getting facial and body twitches amongst other symptoms.

They were all caused by very low B12.

I got 3 B12 injections a week for 2 weeks and now get a B12 injection every 3 months and no longer have any symptoms.

I have a lot of other issues going on so your situation will be very different to mine, but I was recently hospitalised with various symptoms as a result of electrolyte imbalances due to chemo. I had a fizzing/tingling feeling all over but particularly round my lips and radiating out and they were pretty clear that was due to low calcium (which can be quite serious if gets extremely low). I did also have low potassium and phosphate which were causing pins & needles, general weakness, muscle twitching. If you get the opportunity to ask for blood tests I would ask for all your electrolytes to be checked, particularly calcium. I imagine it's quite rare for these to be so out whack unless it's been caused by other treatment, medication, long term gastric issues etc

Thanks all, I have some bloods booked. Just hormones and b12 for now and will see what comes back from those.

Sounds very much like Fibromyalgia. Weird sensations (such as heat, tingling, intense & sudden itching, tingling) in totally random places is one thing Fibro is known for.

I had this, in particular the vibrating sensation and I was diagnosed with Fibromyalgia

How long have you had symptoms? I’ve had a similar illness recently. Started with tingling, twitching and mild pain in joints and muscles. In a couple of weeks it progressed to severe pain, I couldn’t walk. Then slowly got better, I’ve been recovering for three weeks and I’m still stiff but I can walk again. All tests are clear, GP is saying it must be a virus. Apparently some viruses such as parvoviruses can cause muscular symptoms, and new Covid strains are sometimes presenting with mostly muscular symptoms and little or no respiratory symptoms.

I'm having another 'attack' right now but have had the odd sensation of heat in left foot and other odd sensations in left leg and arm all week. The face/nose/throat tingling and odd shaky vision came on in the last hour. Had a busy day yesterday and woke up to the vibrating sensation and aching this morning and could feel that something was off before this tingling/pins and needles thing started again. It's very odd. I feel very heavy and tired and 'out of it'.

Someone else in my extended family is reporting similar symptoms. Muscle pains, pins and needles, tingly, vibrating, tired. So if we’ve both had it then perhaps it is a virus that’s going round, or a new presentation of Covid. I’ve been unwell for five weeks now.

I can tell you though, worrying about the symptoms makes you hyper alert and anxious, and it exacerbates them. Some (not all) of your symptoms could be anxiety. Especially if you’re worried about what’s wrong with you.

That sounds worrying for you. I would get your B12 checked. If you are very low it can cause nerve symptoms. Also if you have a problem absorbing B12 then oral B12 vitamins will be unlikely to help. You could try a spray version that you spray on the inside of your cheek.

I came on to say B12 deficiency

I could tick a lot of those symptoms just now. Even the labia one. I have been to the docs and had bloods. B12 is fine. Not concerned that it's ms (as i was!) as keeps randomly moving round body. I have just covid though and am wondering if it's related to that? It started after that so that's my best guess. Did have peri in the back of my mind too

Sorry you're going through this. Some things to rule in or out: bartonella, Lyme, mould.
Good luck!

@CreatingHavoc I also have very similar symptoms to you and currently waiting for b12 to be tested. I have iron deficiency anemia and my ferritin is on the low side of normal (17). I am also severely deficient in Vitamin D but I don't know if that would cause my neurological symptoms. I have HA so my mind always goes to MS. It's interesting to hear similar stories on here. I wondered about perimenopause, I turned 40 in Jan..

I am hearing more and more stories about people suddenly developing these symptoms and testing positive for Covid. No respiratory symptoms, just debilitating muscle pains and pins and needles and fatigue. My 17yo cousin has it now.