Constant muscle twitching, achy jaw muscle, worried about serious neurological condition

[Bighugs88]

Hello everyone,
I have spoken to my gp and most recently out of hours gp last Thursday. I am 34 yrs old female, normal bp, normal cholesterol, bmi 19.1 (lost weight 1 stone in the past month due to ongoing health concerns, I am eating well now). Had a recent blood test on 2/7/2022 and gp on phone said blood tests are normal I have requested for a copy of my results. The following was tested: vitamin b12, ferritin, folate, electrolytes, full thyroid, full cholesterol, haemoglobin).
I am currently staying with my mum and my daughter is 5 yrs old has autism. Husband is working full time so staying with mum to keep my mind distracted and not to over worry.
Started off with:
Beginning of may 2022 started getting sharp centre chest pains and travelling over to right and left arms and lasting 4 mins this happened 4 times over weeks so went to local A&E they did quick ecgs, blood checks for inflammation viruses and troponin and chest x rays all results were clear. So I have been referred to cardiology and I did have the 24 hr ecg monitor requested by gp awaiting result most likely will contact surgery next week as it has been 3.5 weeks since 24 hr monitor . However, I started getting fluttering sensation of my heart which are palpitations and when I started googling symptoms I started panicking thinking I have a heart problem so this was occupying my mind all the time and so from there the dizziness started feeling like I am on a boat daily feeling like the ground is moving up and down under my feet, constant pressure in my head and neck stiffness. However, staying with my mum for the past 1 month the palpitations have reduced and I don't feel that dizzy any more.

With regards to your speech / swallowing and MND signs - I'm a specialist SLT in swallowing and have seen the first signs of MND in so many patients (as is the norm for speechies) - what you're describing is not MND. Jaw ache and ear imbalance / blocked ears have nothing to do with it either.

I would expect to see:

• tongue fasciculation
• hyper-nasal speech
• imprecise articulation
• lower lip drop
• loud, clunky and uncoordinated swallowing
• multiple swallows for every small sip
• coughing on own saliva
• chest infections and wet, rattly voice

If I saw this, I would refer to neurology and request EMG studies. Even then, not everyone I see has this, they may have other treatable neurological conditions.

Please be reassured. You are not describing a neurological condition.

@Likelookinginamirror
Thanks for your message, gp not prescribing anything as he said ferritin level is fine. Is it possible for me to purchase tablets to increase ferritin level any names of tablets?

Inorganic phosphate: 1.21 ref range: 0.8-1.5
Adjusted calcium: 2.36

I am not suffering from constipation, but do have severe back head pain, fatigue, muscle weakness esp in hands, constant pins and needles, muscle twitching and internal tremor ( back of head)

Different gp's have said I am not anaemic

Thanks for all your messages
If anyone could recommend name of tablets I could try to boost ferritin as gp not prescribing anything. He said electrolyte levels are fine so not really bothered about my symptoms.
Will try energy drink lucozade someone has mentioned that.

There are magnesium tablets but they come with calcium. So I don't want to increase my calcium levels further.
I was taking well woman vitamin tablets daily which has all vitamins and electrolytes.

I wouldn’t really take things like magnesium and calcium tablets without consulting a doctor first. It could be harmful.

There are plenty of magnesium supplements that don't include calcium, and taking a small dose is not dangerous. Otherwise you wouldn't have the shelves of Boots heaving with them!

As to the ferritin, different GPs need to know that there is a vast difference between being fully anaemic, and having a level that gives you quality of life.

God this makes me angry.

Anyway. If you would like to try some magnesium, I would always go with a powder version. I've always found tablets too much, so with powder you can start with a really small amount, and see how you go. There's a reason it's used in large doses for a laxative!

I just had a look at the UK Amazon site, and there's loads of brands I recognise, so just choose one that's cheap, with some decent reviews.

Magnesium citrate is fine magnesium glycinate and magnesium maleate are supposed to be gentler on your gut, but usually more expensive.

Just a quarter/ half dose in some squash before bed, should help you sleep better, relax your shoulders/ neck, thereby helping your headache, and it also helps your "nerves".

But it's up to you.

Meanwhile, I don't know what to say about your GP.

Maybe try an app or yt channel for mindfulness, and breathing exercises. If you're over breathing, you'll get pins and needles, and if it has any impact, you may be able to see a link with anxiety.

Just chip away at different ideas. If the GP won't investigate further, you need to do something yourself to tick things off the list.

I just lost my dad to mnd, you sound like you have anxiety rather than mnd

These symptoms very much sound like long Covid op. Have you had Covid at all?

The internal tremors Head and ear pressure and pins and needles etc are all indicative of LC as is the muscle weakness (I've had many of these symptoms over the last two and a half years). All my bloods came back normal too!

@Blinky21
I am sorry about your loss. My prayers to you and your family.

@Bighugs88 thank you

The only thing that I can think of that might be worth ruling out is Lyme disease. Do you live somewhere with a high deer population (although ticks are everywhere these days), or do you spend a lot of time outdoors? DH had Lyme following a tick bite and these were the kind of symptoms he was getting. But otherwise could easily be health anxiety.

I also echo post Covid syndrome.
I had covid recently which was ok but now have what I can only assume is post Covid neurological inflammation.
It's starts in the base of my skull as a band of pressure around my eyes and upper jaw, my teeth are weirdly spongy.
I can only have my head unsupported for a couple of hours a day or else I crash with increased pressure that then runs down my arms and legs with numbness and tingling.
It's relieved somewhat by rest and ibruprofen confirming in my mind that this is "just" inflammation.
It is very scary though.
I'm also waiting for an MRI and happy to buddy up.

I also had covid very badly 03/2020 which caused chest pain and palpitations but they resolved after 18 months.

Thanks everyone for your support 🙏 ❤, well my gp surgery is temporarily under new management as all patients received a letter that QCQ health regulator did an inspection in June 2022 and decided to terminate contract with management due to failings in the system online report is available. So now you cannot call for an urgent appointment on the same day instead fill out e consult and u will be contacted I the next couple of hours. Let's see how this will work. I know my anxiety is also playing up because I do have other threads that I had started in may 2022, I woke up this morning around 7:30am and was burping like I had a huge urge to vomit but I decided to wash my face and go outside for fresh air (daughter was asleep with her nan). So I didn't physically vomit but feel very nauseous. However, I think it's the internal tremor in the morning also playing a part with my painand sickness as when sitting on the toilet my vision was shaking eventhough I was not visibly shaking outside.

I know I will try what works for me like walking outside for fresh air as in may to June 2022 I was vomiting on empty stomach every morning, lost a lot of weight, iron dropped below 11.5 just out of range and hardly could eat anything. I know most likely from the worry relating to my head and pins and needles I am overthinkinh and probably my body is reverting back to earlier months to start being sick which I am determined not to do as when this happened I was seriously weak and couldn't even move out of bed.
Anxiety can be such a killer 😕 and today was my husband's holiday week.
Hopefully I can get through to the gp let's wait for their call. Will discuss about vision shaking, internal tremors and weakness in legs and arms.

If I can be referred for scans for head and spine as I am utterly exhausted. I had covid in Dec 2020 was really bad ended up in hospital via ambulance due to high bp and vomiting every 2 hours. No tests were conducted but given drip for fluids. But I recovered well after this. Did have both vaccines in summer holidays 2021 and decided against booster. I don't think it's covid related but I am not sure

Hope you get some answers. Agree with PPs who have mentioned post-Covid and post-vaccine as something to consider. I’m on a vaccine injury support forum and these two topics, below, might be of interest to you if you’ve had either Covid or the vaccine (many people here with similar symptoms to the things you have listed).

vestibular.org/forum/symptoms/tingling-numbness-in-body/
vestibular.org/forum/dizziness/covid-19-vaccine-side-effects/

Hope you find the right help and support for your situation.

I think you have a few things going on.

I think your anxious because you do have some symptoms.

Have you tried natural remedies for anxiety such as rescue remedy pastilles?

When my mum was dying and then died this year I has that internal tyke tremor and sickness and they really helped.

You could also make an appointment for an eye test which may pick something up about your hand eye coordination.

And I'd also be surprised it ferritin and that 42 is considered too low.

Mine was 6 when tested once and when it went back "up" to 10 I felt much better.

No idea what is now but I've had a hysterectomy so I won't suffer the reasons for it being 6 again

@stayathomegardener
@pickacard
Thank you for your messages, will keep in touch. Literally I don't know how much is anxiety manifesting my physical symptoms and if there is something going on. I have suffered with anxiety health related in the past but it never lasted this long with these horrendous symptoms. Seriously this is affecting my physical & mental health changing my personality and its even affecting relationship with my husband and my daughter she can see I get upset easily and I am lying down most of the time and she is becoming restless with her behaviour as she wants mummy like how she was before full of energy and laughter. Sending prayers to everyone.

I have had pretty much all of these symptoms and it was anxiety. I was particularly worried about the internal tremors and sometimes it was so bad even DH could see and feel that my muscles were visibly shaking. I had head/nose pressure, dizziness, palpitations, internal tremor, muscle twitching, clumsiness, shaky vision, blurry vision in one eye...probably more than that but that's what I can remember. I thought I had something neurological like Parkinsons.

I didn't believe all these visible symptoms could be caused by anxiety and I resisted medication for a long time. But talking therapy and CBT could only do so much. I started taking sertraline about a year ago and it has changed my life. It took a few months but every single one of those symptoms other than the palpitations has now gone. I don't have any long-term effects from the medication but I did feel worse for the first 2/3 weeks. It was worth it though as I feel like I have my life back.

The ongoing palpitations seem to be possible POTS which I'm now having tests for but as I know that it's not dangerous it doesn't bother me any more.

I really think it's worth trying medication. It's worth the risk of side effects to be permanently free of all of the horrible physical symptoms of anxiety.

@Penguintears Thank you for your message, wising you good health. I was prescribed sertraline last year for general anxiety and I recoved pretty quick and so the medication was stopped. I have started talking therapies had an initial assessment and now waiting for the sessions to start( waiting time is many weeks). I might speak to the gp about sertraline as I was previously taking proponlol in July 2022 but the reaction to the medicine was horrendous felt completely disorientated and felt extremely faint, so gp advised to stop taking proponlol.
Let's see what the gp says if my symptoms are this bad then I should start some medication, see how it goes & trying other things has not completey helped.

@itsgettingweird
So sorry about the loss of your mother 🤲 i will definitely get an eye test booked. At least I know people have suffered with similar symptoms, I wouldn't want this on anyone else but at least I know I am not alone and going crazy.

You could basically be me.

I've had palpitations for years - seem to have have gotten a bit worse recently but heart is structurally normal and heart monitors have come back OK, so am trying to learn to live with them. You've been thoroughly checked out by the sound of it so please be reassured. I also get the headaches, the ear and head pressure - you name it!

Re. the MND worries. I was in exactly the same position as you about 6 years ago. I had the twitching and also perceived weakness in one of my hands for a couple of weeks or so - I had completely convinced myself that I had MND and that was the end of me. DH came home from work one day to find me with a 1/2 full bottle of wine (I'd already drunk the other 1/2) in fits of tears. I spoke to the GP who reassured me it wasn't but of course I didn't believe her. I spent hours and hours scouring the internet, reading posts on MND forums and trying to second guess. But you know what happened? They eventually went away after a few weeks.

Anxiety can manifest itself in so many weird and wonderful ways - including a plethora of physical symptoms. And I've struggled with it, and depression, and panic disorder for about 13 years now (also PTSD from a major health scare in 2018 but this was absolutely nothing to do with any of the above). I'm also a drug avoider and resist taking anything new if I can possibly avoid it (do take beta blockers though which have helped with the panic). But what has helped me enormously - particularly with the health anxiety - is CBT and meditation (I was sceptical at first but they really were effective).

I know this fear can be all consuming, I really do understand. Please speak to your GP again (or self refer to your local psychological services if that's available in your area) and ask to be referred for some support.

I have an eye test booked for tomorrow.
Also gp surgery called and have an appointment this Monday morning.

Does anyone know of reliable and efficient places for private mri scans with someone to review your results?

Just want to check head and spine. Or private neurologist in london?

You can't just 'have an MRI' - OK you can but then you just have some pictures.

An MRI needs to be actually targetting a specific symptom and answering a clinical question (for which MRI is an appropriate test) to have any meaning.

I would lay money that your jaw, back of the head and neck pain is caused by anxiety. Do you clench/grind your teeth at night? I would be very surprised if you don't, given your history of anxiety.

The jaw is the most powerful muscle in the body and when you grind at night, it goes for it, much stronger than when you are eating. My teeth are all ground off at the tops from my teeth grinding and the jaw/face pain when it is bad is horrific.

Plus all the energy you put into being anxious - you have to be very tense to have a tremor. This all takes in out on your muscles which will be rigid, taught and full of knots.

Stopping sertraline sounds as if it was a big mistake - were you well with absolutely no anxiety for a full 6 months when you did it? Also without having put the hours in to CBT while you were on it, you don't learn better ways of coping when you are off.

I have a very very long list of physical symptoms I've had through anxiety, it can do practically anything it wants.