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.

However since July 2022 the following has been happening:

-random day in July I started getting muscle twitching lasting a few seconds in my left arm, left ankle, right leg on the same day. This has now progressed into full over muscle twitching and spasms for a few seconds daily especially when resting and sitting over my both arms, legs, thighs, lips, chin, abdomen

• since July I been having daily internal tremors for a few minutes at the back of my head everyone when I wake up and when I ly down to sleep. I can feel vibrations in my chest, upper shoulder and head.

-there is constant pins and needles on my left arm, left leg only not so muc on the right side. Constant pins and needles and a lot of pressure on my head. Taking paracetamol pressure and pain keeps coming back.

• for the past 3 days whilst all this has been happening, I feel like my left hand is quite weak and my fingers feel ver stiff and I have no energy when I lift things my hand aches. I started getting neck pain upto my jaw. SO when I open my mouth wide to eat my jaw hurts where my cheeks are on both sides.

Have been taking multivitamin tablet and applying magnesium sleep solution for the past 1 month
Spoken to gp he said blood results are normal So no vitamin deficiencies he said this seems like very bad health anxiety. I have been referred to talking therapies and prescribed medication for anxiety. However, not keen on medication due to side effects so relying on talking therapies and keeping g myself busy at the moment. However, I have suffered with anxiety in the past 2015 which was health based but I have never experienced muscle twitching, mouth pain, constant head pains, tremors etc. I am so worried that I have MND which I know is not treatable and I just feel like I am waiting for the worst to happen. Gp said to see how I go and that anxiety symptoms can change and last for a long time and can come and go especially relating to health anxiety. So I have not been referred to neurology, but I would have preferred to be tested and referred so that would at least put my mind at rest.

I don't know what I am expecting by putting up a post, but just support and hugs, especially from people who can reassure me that they had similar symptoms and it was anxiety based and can last for a long time. Because my blood results are normal according to gp (have requested a copy) I am convinced that it is my brain and neurones that are the problem. I keep looking at my daughter when she is asleep at night and cry thinking I am having MND. The jaw ache is making me think I will lose function of my speech and swallowing- my life never use to be like this, I use to be a person if I had any symptoms pain, fever I would just get on with it and recover o would never think or start searching about the worse scenario. Now my mind is telling me I don't have long left and that I am progressing towards a serious illness which is terminal.

My daughter who is 5 yrs old depends upon me a lot and she is very attached always giving me kisses and hugs. I just can't imagine not being here to see her grow up and achieve so much, she has autism. What was supposed to be fun and entertaining summer holidays has turned out to be a disaster due to all of these symptoms which I don't know are anxiety or MND. My husband has been supportive but everything we talk I try to be brave but I just keep breaking down and crying on his shoulder. I wish I closed my eyes and all of this just disappears so I can feel normal again.

Keep doing strength tests with hands and feet which I think has made everything worst which is probably why my fingers on my left hand are so stiff and weak. But the jaw pain is terrifying me and I feel constant pressure in both of my ears. When I swallow I feel like my ears are blocked.

My BIL has MND. His first symptoms were muscle weakness and dropping things. Then he found it was hard to hold a pen or fork. My SIL saw he had muscle wastage in his shoulder and thats when he went to GP. Lots of people in his support group started that way and tbh your symptoms do not suggest MND.My BIL was diagnosed 5 years ago and is only losing speech now. The disease progresses slowly and losing the ability to speak is usually the last thing to go.

its a very rare illness, but especially if you are under 40 and female. Anxiety symptoms can last for months and get worse, esp if you are fuelling that anxiety by reading up about all the symptoms. I would strongly advise you step back from Google and re consider your stance on anti depressants as its clearly getting to the point its ruling your life.

Best of luck.

OP, I am sorry you are having these unpleasant symptoms.

First of all let me tell you that sharp centre chest pains are not related to your heart. Cardiac pains are never sharp, stabbing or burning.

Palpitations are most often caused by anxiety, stress, excess caffeine.

The tingling you describe in you limbs could be caused by 'over-breathing', a symptom of anxiety.

The muscle pain you describe could be due to muscle tension - unconsciously tensing muscles, again due to anxiety.

Feeling 'shaky' inside can also be a symptom of anxiety.

Anxiety can cause the most distressing symptoms, that often seem to migrate from one part of the body to another.

All I can suggest is to ask your GP to refer you for a MRI scan to put your mind at rest. Exercise is good for anxiety even if you don't feel like it.

"Now my mind is telling me I don't have long left and that I am progressing towards a serious illness which is terminal.". Please tell your GP about these negative unpleasant thought you are having.

I hope you feel better soon x

You have seen a real live health professional who has advised you this is likely to be health anxiety.

Your symptoms actually got better when you stayed with your mum - did you have more support, feel less stressed?

You aren't describing the symptoms of the onset of MND. Plus to be diagnosed with MND at 34 would be unbelievably rare.

None of us can say for certain as we are just at the end of a screen, compared to your GP who has been able to assess in person but don't you think anxiety is a very likely diagnosis here?

I would disagree that a referral for an MRI scan is the answer:

Treatment for health anxiety usually involves trying to avoid referring for more tests and investigations as they don't give the hoped for reassurance. Instead they reinforce that 'it must be something, the doctor is looking for it' and you keep wanting more and different tests.

OP has already had blood tests, a trip to A+E, a 24 hour tape and a cardiology referral but none of this has reassured her.

Step away from Google, stop doing strength tests on your wrists, and reconsider whether it is anxiety stopping you from having the antidepressants that would help.

see How it goes in the next few weeks. If it hasn’t resolved or you get new symptoms then you could go back to ask for neuro referral - they may want Scans like MRI. But you have started the investigation process - which is positive. Sending you good wishes!

It sounds like stress, which can manifest in all those ways.

Thanks everyone for your messages, I like to believe this is severe health anxiety as in may 2022 I kept thinking I am having a heart attack, but the symptoms have reduced and I have been referred to cardiology. It's when these symptoms started that my mind is now telling me something might be neurological. I will wait and see how I go and if symptoms are not going away may start medication or speak to gp about referral. Someone did mention earlier though if it's severe anxiety the mind does play up thinking if it's not this then it must be something else. I will see how I go but what I have noticed is that when I am on my own the thoughts are really bad.

Just a quick question can anxiety cause muscle twitching. I do remember someone mentioning in a previous thread not this one about having long term twitching.

Hi op, hope you're good .
Reading you're post reminded me of myself a few years backs. I had and still do have all the symptoms you have described, as well as the muscle twitching which will happen all over my body, most recently i had twitching on my left side of my chest, and convinced myself i was going to have a heart attack.

After goimg to a&e multiple times, having every test done, I was diagnosed with health aniexty, which at first i refused to believe as my symptoms were really bad, I told myself they missed something out. And like you when I'm around people my aniexty lessens, I then became extremely in tune with myself not in a good way, and Google was my best friend .

I started taking medication, which did help, but didn't address the problem, talking therapy really helped me, also had to retrain my brain, I still suffer from aniexty, and still have attacks out of nowhere, but they are less now, and I have a better understanding of what is happening.

I hope you get to a place where you can make peace with you're aniexty treat it like a friend, which I know sounds crazy , I found the more i stressed and the more worked up i became the worse things got.

You do not have MND, it does not start like that. It sounds like crippling anxiety that gets worse when you get more anxious. Speak with GP.

Speak to a gp. It could well be anxiety causing your symptoms and getting worse due to you worrying and causing more symptoms.

I have been in a similar situation to you. It’s all consuming and v scary. In my case it was actually a reaction to a drug and it wasn’t recognised at the time. I was told it was anxiety...I’d be cautious in writing off everything as anxiety but, at the same time, you are jumping to the absolute worst case scenario. I can totally associate with how you’re feeling and how awful it is. For now, let your mum take care of you. Try and not think of the worst case. Focus on resting. If you still feel you’re not getting anywhere you can request to see a neurologist.💐

Same here and I was diagnosed with myocarditis (post MRNA, can also be post-Covid). MRI was crucial to diagnosis. Was also told at various points ongoing symptoms were anxiety - extremely frustrating and I saw other women similarly disregarded at cardiac clinics, hence I feel I have to speak out. After a few weeks echo and bloodwork were within normal normal limits, but the MRI showed issues that need ongoing treatment.

Good morning everyone
Staying at mums place, just wanted to let u know that I woke up this morning and whilst lying bed the tremor was there back of my head. I feel constantly like I am on a boat swaying side to side (balance is really off).
I had a talk with my mum as on Saturday I went shopping and I was looking sideways and tried to use my left hand to reach out for the clothing item and my hand completely missed the item it was like my coordination was off. I didn't think much of it as I have been really having negative thoughts. Then yesterday evening I was opening the fridge and turned sideways and stretched my left arm out to close the fridge with my hand and I felt why cant I feel the fridge handle and it was because my left hand completely missed the handle. I don't want to jump to conclusions as I already been very anxious for the past 2 months. It just seems to me that if I am not directly looking at the item then I am finding it possible to grab hold of things from the side as if my coordination is way off. I am able to grab hold of things and lift things using my left left eventhough i have been having pins needles, muscle twitching. What I have noticed is that my balance is off like being on a boat which feels horrendous and coordination from the side is messed up, the incident in the evening I was really happy and having a conversation with husband when I went to the fridge.

Someone mentioned about medication having a side effect, I am so sorry to hear about that, hope you are feeling better.

I already had blood tests which are normal and if my cardiac investigations are fine, then I will need to see if there is a neurological issue going on. I am not taking any medication apart from multivitamin tablet- so side effects can be ruled out. I want to rule out neurological issues before I stick with severe health anxiety.

@Zapabc
Thanks for your message, hope you are feeling better now.
After numerous visits to A&E at the same local hospital they couldn't find anything when I was having chest pain and palpitations. My gp has referred me to cardiology it might be 2 to 3 weeks after my first consultation is September that they might do echo test and MRI if they decide to do it, I have noticed after blood works and basic testing is normal they don't want to investigate further which is a shame. My husband is off from this Wednesday I might decide to get a private tests done there are packages available whilst I wait for the nhs. But it's the coordination problems that has really got me worried and feeling constantly lighthedness. I left a voice message to the organisation who was processing my 24hr ecg report of they have sent this to the gp.

Best wishes @Bighugs88 , sending a virtual hug. Do push for them to fully investigate and an MRI will see things an echo can't. I paid for some testing and consultations to be done privately.

@Zapabc
Sending you warm virtual hugs 🫂 if you don't mind me asking what tests did u get done privately and the name of the organisation. I live in london there are private clinics located at Harley street. I do have my appointment coming up in September for cardiac. But I might see a neurologist privately as gp hasn't rerrefed yet and the waiting times for neurology are twice as long compared to cardiology. My left hand feels so stiff and weak lifting and holding anything I have to keep fidgeting my fingers as they ache. The pins and needles are really prominent on my left hand and left foot compared to the right limbs- don't know if it's my anxiety fixated on these physical symptoms now or there is something going on that needs addressing (neurological) as my blood tests were normal.
I have obtained a printed copy of my results and will share with u guys later on.

Best wishes @Bighugs88 Consultations with a specialist, to cut down waiting by getting recommendations for follow up testing and treatments. Also to run through questions with, as this is so tough. Can 100 per cent relate to the anxiety of going through these times. But also don't let doctors dismiss your symptoms as anxiety, until they are fully investigated.

I had all of these and then they just went away one day, so weird.
Initially diagnosed as vit d deficiency but the symptoms remained even once my levels were up.
The only time I get the numbness now is when I have a migraine.
I too had terrible health anxiety and once that subsided the dizziness went away.
Sending massive hugs I know how horrible it is.

These are my recent blood results, gpsaid they are fine:

Ferritin: 42 ref range: 13-150
Sodium: 139 ref range: 133-146
Potassium: 4.6 ref range: 3.5- 5.3
Free T4: 19.0 ref range: 10.5 - 24.5
TSH: 1.77 ref range: 0.27- 4.2
Hb: 31.0 ref range: 20-41
Folate: 14.7 ref range: 3.8- 99
Calcium: 2.48 ref range: 2.2- 2.60
B12: 539 ref range: 197-1000 ng/L
CRP: <1 ref range: 0-5

Blood cholesterol is fine.
I do have a gp appointment coming up will mention about my recent symptoms, just about getting things done with a 5 yrs old is difficult. The back of my head is killing me, the region where the spine connects with back of skull is killing me, the best way to describe it as there is weight on my head. This isn't like a typical headache, making me very agitated, nauseous, opening my mouth to eat hurts and my ears feel blocked with lots of pressure- don't know if this is contributing to the pins and needles and weakness to my hands. I a just taking painkillers paracetamol but it's not helping. Any suggestions 🤔 I might push the gp for head and spine scan

Hi, your ferritin is way too low for a woman of child bearing years. My haematology said it ought to be over 100. So get on that.

Meanwhile, please ask them to check your PTH and phosphate levels. Your calcium may be in range, but it's still on the high side.

This sounds an awful lot like symptoms for many things, but the jaw issues and pins and needles are very striking, and parathyroid problems give you a lot of the issues you mention. Tell me about any fatigue, and also constipation, either of those a newer problem?

Have a quick look at the website parathyroid.com, and also just google parathyroid symptoms.. if you tick lots on that list, ask for those (very easy) tests. Also try the UK parathyroid fb group.

A lot of what you describe sounds like some kind of electrolyte issue, but meanwhile, please don't dismiss antidepressants out of hand. If they're the right ones for you, they will make it much easier to handle your symptoms, and keep perspective during this horrible phase.

Good luck!

You need to consume the right balance of electrolytes and water for your nerves and muscles to work properly - sodium, potassium, calcium, magnesium etc. It is easy to get depleted in this warm weather.

Perhaps try a sports rehydration drink like lucozade sport. I find it undeinkabe near but diluted 5050 with water it is ok.

Undrinkable!