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.

Good morning everyone,
I have a face to face doctors appointment today. I have wrote down all my symptoms based to most recent.
Will hopefully discuss recent onset of nausea, loose stools close to diarrhoea daily, tremors (happening at rest and visible on both hands and arms). Head pain and stiff neck / daily dizziness & loss of coordination.
If doctors think it's all anxiety, I will be honest with them and say I have never experienced these symptoms with anxiety before, for this long, so if they could refer me for tests and investigations as this is affecting my everyday life and daily activities such as writing, planning eating and speaking. Already lost weight, don't mind trying medication as i am already doing mindfulness and keeping myself busy but symptoms are out of my control

How did your appt go? I hope they are listening to you and following up appropriately. How are you?

Well today my upper left arm was shaking a visible tremor only upper arm up to elbow, my husband and aunt notice this. However, when I press on my arm it usually calms down when it is happening. Gp did notice fhe tremor she was doing my blood pressure on my left arm and it was shaking. She then asked me to outstretch my both arms and to walk touching tip to heel in front which was fine. She lol said ideally you been ill for so long, A&E should admit you and then observe you over the days and do tests. I said A&E will not admit unless they see something which is really concerning unless you would write me a letter explaining your concerns and i can take this to A&E the gp then went quiet. She said will do blood tests again just to check your thyroid and vitamins, at that point I said to her I had my bloods done on 2nd of Aug and all the results were fine within normal range. If my bloods are fine again then could you please refer me to neurologist. If there is a concern regarding my tremors which are now visible on my left arm then you should investigate further by referring. She said we will discuss following results this week. In addition, she has prescribed me sertraline 50mg take 1 tablet at night, but I read the common side effects is tremors/shaking/involuntary muscle contraction affects 1 in 10 people, pharmacist said speak to gp again.

Wanted to ask if anyone had suffered tremors and still decided to take sertraline?
As last year when I was on this medication I didn't have twitching and tremors as physical symptoms, so looking at my current situation I am quite apprehensive if I should start sertraline?

If someone could get back to me, if they suffered or experienced visible tremors in their arms at rest but stopped when changing positions and it was just anxiety related or something benign and not parkinson's disease.

I have been experiencing daily early morning tremors & most recently visible tremor in left upper arm at rest but stops when I change position of my left arm.
Anyone out there who took sertraline but already where having tremors? Did the tremors worsen?

I think the fact you have moved from worrying about MND to worrying about Parkinsons is a big signal it's anxiety.

The tremor of Parkinsons is unmistakable, not in the upper arms and with MND, so rare as to not exist in your age group.

There aren't really that many causes of tremor and anxiety is a big one. I have tremor when I am anxious.

Plus you already know sertraline works for you without side effects. That won't have changed in a few months.

@AnnaMagnani
Thanks for your reply, when I do think about my problems I can see that I am going from one illness to another panicking as I might show 1 symptom and then start to fixate and worry all day long. I will book appointment with doctor end of this week to get blood results and then discuss sertraline side effects with tremors, if gp says go ahead and try and the I will start by weekend. Thank you once again for providing support x

Hi, OP -

Again with true respect, not least because I’ve been there, I must say that I think @AnnaMagnani might be on to something. I hope the experiences of PPs and I did help you concerning the possibility of MND, because that community is one of the experiences MN is all about.

But you’ve not mentioned leg symptoms since (that’s great) and are now focused on arm tremors and an entirely new neurological disease. It is a classic symptom of anxiety.

Again, no one here can deny you have Parkinson’s but your GP has seen a lot of it and a good one would be alert to it in anyone presenting neurologically. (I also don’t think the tremors start in the upper arms typically.)

You say you are terrified about leaving your DC behind. Of course. If this is anxiety, which is not the only possibility but does seem the most likely one, just think how much happier and more present you will be for them once you get it sorted!

Hi everyone
I saw the doctor on Friday, I had to do another blood test urgently as my WBC was slightly elevated and had slighlty elevated inorganic phosphorus at 2.34 the upper range is 1.5 I think. Doctor said could be u was unwell and therefore blood results came like that. She said your urea & electrolytes are within normal range so does not indicate a kidney problem. The blood test She requested was to check phosphorus again including parathyroid hormone, vitamin d. She wants to check my vitamin d. She said if phosphorus is high then it can cause low calcium levels but your calcium is good so it might be one of those things. I did the blood test again on Friday.

I did mention her about the tremors she said we will take this step at a time. Wait for the blood tests and ecg report which should be at the surgery eraly next week. If tremors still persist or are happening more often and the intensity changes She will look into this as she said I am not anaemic. She said for now it's not neurological but we will see how you go.
I do have a private echocardiogram booked for my heart on Tuesday as I still do have palpitations and a weird feeling in my chest so until I get seen on on nhs in September I am getting echo done.

The private clinic will give me a report and will send to gp via email if they see anything that needs to be addressed. Hopefully, the scan will go well and the results will be fine.

I had my private echocardiogram today, the sonographer was very polite and the procedure took about 25 minutes. He told me during and after the procedure that my heart is fine and I have received the report today via email and it was fine. Size of all chmabers are normal, the cables look healthy. The aorta and inferior vena caba are normal.and there is no swelling or presence fluid in the pericardium.

So he said the palpitations in your case are not caused by structural defects as your heart structure looks normal. I have requested from the gp my 24 hr ecg report which has arrived at the gp surgery. I do have an appointment booked on 1st September to discuss vitamin d results, PTH results (not sure what the levels are as not showing on nhs app) & ecg report. Having said that the organisation who analysed my ecg said if there was a dangerous rhythm then we would call you directly and the your surgery. So let's see what gp says. Having said that my palpitations are not a fast heart rate thre more like forceful beats out of sync like extra and skipped beats with thuds and fluttering most common at rest or relaxing.

The surgery will get back to me by 25th August regarding a copy request for 24hr ecg for my reference

Do you find the symptoms reduce if you rest or take ibruprofen?

I now have a referral to a neurologist for the 14th October but that took five GP visits.

If you have raised pth and Normal calcium then look up normocalcemic hyperparathyroidism

Forceful beats out of sync, worse when you are doing nothing, are likely to be ectopics - which don't need any treatment and get worse with anxiety.

Did you document anything during your 24 hr tape? Hopefully your rhythm will be normal at times you felt something and you can be reassured. It is very common for feelings of palpitations not to correlate with anything on the tape.

@stayathomegardener
Thanks for your message, I am happy for you that you have been referred for neurology. Do please let me know how you get on. The neurology waiting times near where I live are very long. Gp's are quite reluctant to refer well that's what I noticed with my surgery they keep wanting to do blood tests and only refer when you keep going back for appointments or with worsening symptoms. To be honest with you my symptoms to some degree are less when resting, but the palpitations are more noticeable and feel extremely scary when resting.

@123boom
Hopefully I will find out about my PTH levels and vitamin d next week on the 1st so will speak to gp about this.

@AnnaMagnani
Thank you for your message and reassuring me I am always a nervous wreck with my health. I made a note on my 24 hr ecg about chest pain and dizziness so let's see if my heart rthym changed during these episodes as I do have quite prominent palpitations daily I did have 2 episodes when my heart was fluttering really weirdly in my chest when I had the monitor on so let's what comes up I am hopeful that these might be benign palpitations and nothing serious.

Also the surgery said I can pick up my ecg report tomorrow morning, but gp appointment is 1st sept. Reception said gp has looked through the report so I am assuming as I haven't been contacted urgently that most likely everything is fine

@123boom - completely agree, it's a common mistake that GPs, and even endocrinologists make.
My calcium was fine all the way through, and ended up having 3 out of 4 parathyroid glands removed.

There's no such thing as a as out of range phosphates, pth etc being "just one of those things".

@Bighugs88 how are you doing now?

I could have written so much of you wrote myself, although my symptoms are slightly different and quite bothersome, so definitely worried about MND. :( waiting to see a neurologist but just wanted to say that I know how you felt when people just think it’s anxiety / PND etc... x

@Wobblyheart
Hello 👋,
Hope you are doing OK? Hopefully you will get seen by the neurologist soon. Do let us know how it goes.
I am better now in terms of my physical symptoms have reduced. I had another ecg monitor test in Oct 2022, the results were fine just have PAC- atrial ectopics- which the cardiologist said is what the thuds or flutters you are feeling it's coming from your heart but don't have a dangerous arrthymia.

Looking back now I did go through a hard time last year, I had 2 consecutive miscarriages in 2022 which later on most likely manifested into full blown anxiety with many symptoms I was experiencing. I do take a magnesium citrate tablet daily which has helped with the ectopic beats and my muscles are hardly twitching anymore.
Have been experiencing a stressful time yet again it's a long story but it's to do with husband's new employer regarding proof of address evidence it's tedious of what they do/don't accept. I don't know I have become very anxious as a person I always think the worse is going to happen regarding any scenario relating to work, housing, finances etc. These are tough times the living cost is absolutely horrendous in london and getting a stable job is a miracle to pay bills. There is always an internal battle going on in my head draining me out and this is making me nauseous to the point where i don't eat much. It's best to get your physical symptoms ruled out by tests. Mine are a manifestation of prolonged anxiety/worry.

The one thing I would counsel is asking GP (next time you're there) if they checked your PTH .

Take some meds for anxiety.
Have you been offered them?
If they having no impact after three months then you can go back and refer elsewhere.
Seems a low risk option

I have been reading through and I've had anxiety all my life and convinced myself I had mnd too. I went years thinking I had all the symptoms, all the same ones you've described. The internal tremor was the thing that always worried me also. Last year I went on sertraline and it definitely caused more twitching and tremors, muscle stiffness and also jaw clenching. I believe some of these symptoms can be permanent even after stopping sertraline, so you may be experiencing these symptoms because you've previously been on it. Now I've been on it a while I'm used to the muscle twitches and tremors and my anxiety has almost entirely gone, I'm a new person. Also just to mention when I was in the height of anxiety I would also have coordination problems, I would trip and stumble and feel jittery and shaky all the time. I've come to learn it was the constant adrenaline rush and fall from working myself up, it was leaving my body in a bad way! I hope you're okay and coping better. The feeling of being on a boat could well be vertigo- something I also got when I was really wound up and panicking about something x

Oh and just to add I also get the sensation of my heart skipping a beat! Always when I'm laying in bed and usually when I'm on my left side!

I’ve had a lot of similar symptoms and my PTH level is more than double the top end of normal levels but calcium and Vit D low - I had put a lot of symptoms down to other health issues plus the menopause maybe but now hoping that it might be the PTH causing this

@mrsbyers - I realise I'm a random stranger, but you need surgery. There is no other way to deal with it, and it's wreckless for doctors to leave it. If you look in the menopause threads, there's a whole thing about it. Do some research, truly, it's life threatening (I would never be so dramatic if it wasn't the absolute truth). Average life expectancy of something with PHPT (primary hyperparathyroidism) is mid 50s. I have a feeling this is changing rapidly, but left untreated out absolutely is that critical.