Twitching, terrified. MND?

[BananaLamah]

Started a year ago with burning muscles and twitching all over. Saw several different GPs, had loads of blood tests, no obvious cause. They have said anxiety and stress. I’ve had therapy to destress.

Recently my temple has begun to twitch and my face is burning like the nerves are inflamed. Twitching and burning is still all over, now my hand is twitching so bad that you can see it. GPs still refusing to refer me to neurology because I don’t meet the criteria, because it’s all over and not in one area, and I have no weakness or other neuro symptoms.

I’m shitting myself thinking I have MND or some other sinister disease. I’m literally having a nervous breakdown. Can anyone talk me down please?

Bump 😢

I don't have anything useful to contribute, but I'm sorry you're suffering like this and it's causing such stress. Sending love.

Kindly, you're saying you've had therapy to de-stress but that you're having a nervous breakdown over this so you clearly are not calm/de-stressed so therefore these could still be anxiety symptoms. Burning face could be rosacea, do you get flushing with the burning sensation?

have your B12 levels been checked? Deficiency can cause a lot of neurological symptoms.

Ask for a referral to Rheumatology. Auto immune conditions can cause burning to nerve ends and electric shocks , in particular fibromyalgia.

Out of interest what were your B12 and iron blood results ?

I needed a referral to neuro opthamology a couple of years ago because the optician picked up worries in a standard visit - urgent 2 week wait type referral - I convinced myself I had MS in the wait (which was much longer than 2 week...).

Had constant numbness, tingling, burning - was spending hours on Google obsessing over it.

Had the appointment, had an MRI, nothing found. Honestly the numbness, tingling, burning pretty much went away over night. I was absolutely impacting it with my stressing and obsessing.

I’ve been told I don’t meet the criteria for any referrals other than MH.

B12 was 300, apparently normal is 190? Iron was 22, normal is 15. Vit D was borderline so I’m on supplements which I’ve had for 3 months and they haven’t helped.

Why have you started a second thread? You have had some very helpful advice on the first one.

I’m having severe panic attacks and can’t get any support from the NHS, as I said in my op I was hoping someone could talk me down because I’m spiralling.

For vitamin D if you are taking 800IU of D3 then take 1000IU.

Make sure you buy it from a pharmacy or health food shop as some of the cheaper brands don't have sufficient vitamin D in them as it is considered a food supplement.

Also take vitamin K2 MK-7 with it.

As you aren't deficient you don't need a loading dose. Regardless whether you are deficient or insufficient it takes more than 3 months to really feel the benefits.

Iron was 22, normal is 15.

What measure of iron was it? Ferritin? Serum iron? It is important to know what was tested. As you are aware from a B12 test the NHS often gives levels so you can function but aren't optimal for your health.

Twitching all over wouldn't be a common sign of MND. It sounds more like an essential tremor which is often brought on by stress, which it sounds like you are. Is there any steps you can take to help manage your stress? Hopefully if you can reduce your stress these physical symptoms will also reduce.

If you have had therapy to de-stress what did the therapist suggest you do going forward?

Depending on the type of therapy you can be given self care work to do between sessions and to continue once the sessions have ended e.g. meditation.

Also if the therapist identified something in your living circumstances that you can't change e.g. carer they should have explained this is to help you deal with the situation in the moment.

On the most recent test my ferritin was 22 (normal is 15). B12 was 300 (normal is 190). Vit D was 43 (normal is 50). They said the only supplement I need right now is Vit D - it’s low but it isn’t low enough to cause these severe symptoms.

Six months prior to the onset of symptoms my Vit D was down to 24 so they gave me supplements. My haemoglobin was 102 so they gave me iron pills as well.

When the pain and twitching started my ferritin was 15 and haemoglobin was 136, Vit D was 50 and B12 was 273. They didn’t offer me any supplements at that time because all those numbers are classed as normal.

For the past couple of months I’ve been taking vit D, iron, and calcium with magnesium and zinc. It isn’t helping.

If your ferritin level was 15, I don't know why your gp said that was normal. Under 30 in women is usually treated as anaemia. Have you asked them about this? I would find yourself a good iron supplement in the meantime.
You can absolutely get twitchiness through stress and it does sound like there's some serious panic going on here too. I know it's very annoying when gp's fob off women but you do need to try and get the stress under control to actually find out if there's something else going on.
Can you do some gentle yoga or something for now? And look into getting another therapist?

Normal range for ferritin is 15-150 according to the NHS app. Mine was 15. They did give me iron supplements but even now it’s only gone up to 22.

Yes there is some panic and anxiety going on. I’m increasingly worried and scared the longer this goes on. I’m convinced the twitching is something sinister.

We need to see the lab ranges next to your results as each lab is different.

Ferritin needs to be around 60 to 70 for healthy hair growth so anything under that is a no, despite the NHS guidance. Get yourself some iron tablets with vit c (don't have coffee, chocolate, tea, cola within 2 hours of taking it).

I have no idea of levels for b12 but deficiency can cause pins/needles, twitching palpitations and mental distress. Might be worth a read up before going back to GP. I know you said yours was 300 but if the upper limit is a lot higher, are you even slapbang in the middle?

https://www.nhs.uk/conditions/vitamin-b12-or-folate-deficiency-anaemia/symptoms/

I'm not big on supplements, but when suggested I give them a try. I always take Vitamin D3 (50,000 II weekly as I'm always low. I've had luck with Magnesium Citrate and Vitamin B6 Niacinimide fornerve pain. Do youtakeany prescription medication or other supplements? I found my body spasms while trying to get to sleep were a side effect of a medication I was taking, so the adjusted the dose. On the flip side, stress and anxiety can run havoc with our bodies. I've learned basic tools that work for me that keep Me controlling it vs IT controlling me. to keep me.

My dh had symptoms like this during a breakdown. Eventually diagnosed with functional neurological disorder caused by stress.

@Mynewnameis did your DH manage to resolve his symptoms, and if so, how?

Honestly, if you're having severe panic attacks I'm pretty sure your symptoms are anxiety related. I get all sorts of neurological symptoms when I'm even a tiny bit stressed or just busy. Twitching, burning pains weird goosebumps on one leg and not the other!
The doctors will usually know when you need to be referred.
Doesn't sound like MND to me.

Vit D was 43 (normal is 50).

Where I live in London optimum vitamin D levels are over 75 but under 150.

I am aware elsewhere in the country that they say 50.

As the NHS would allow me to be retested regularly my GP practice were happy to take my private tests and use 75 as their bench mark.

I should add until I got my vitamin D and B12 levels up I couldn't get my ferritin levels up. I was however severely deficient in vitamin D. As you aren't then you may need to get your B12 levels up. (I think you posted a thread where you got advice on what to do. )

For the past couple of months I’ve been taking vit D, iron, and calcium with magnesium and zinc. It isn’t helping.

You can't take all those supplements together. You can take the vitamin D, magnesium and calcium together. However you may not need calcium unless you are lactose intolerant/allergic to dairy. You need to take it with food specifically fatty foods like your lunch.

You need to take the iron separately from calcium and zinc as they inhibit it's absorption. Preferably taking iron with vitamin C. You also need to avoid taking it with food especially those that contain caffeine e.g. coffee, tea, cola, chocolate. So you should leave a minimum of 2 hours either side of taking a dose and eating. There are other things you can do like taking it every other day to help absorption and taking before bed to help make taking it easier.

He's not totally recovered but much better. Has returned to work part time. Its worth reading about the physical symptoms of stress and burnout. Your ferritin levels don't sound great though.

Dh had a load of tests to rule out other things before the diagnosis

@BananaLamah I had all of this post covid and post my 3rd vaccine- forehead felt like it was on fire- burning eyes , stiff neck, weird buzzing in one finger and calves, intermittently (like a battery was switched on) back of head headaches -weird heady feeling like I was going to feint and a weak leg - one sided - I had lots of tests, slight bit D deficiency , slight folic acid deficiency and very mild hypothyroid - basically my nervous system went nuts- gradually over 18 months it all improved- but it was slow- for me it was a very low dose beta blocker daily, bit B spray , vit D spray and a multi vit plus gluten free as much as I could and I lost 2 stone too- - the neurologist was great - she asked me what I thought I had- my honest answer was MS , MND and brain tumour- she explained why all these were very unlikely - MS in particular tends to present differently at 61 as I was at the time . I also got myself into a right state like you with anxiety and googling- I also found walking a lot and a great deal of water helped as did plenty of sitting doing not much and deep breathing from diaphragm

What’s freaking me out at the moment is my hand visibly twitching. The muscle between the thumb and forefinger is rippling under the skin. That can’t be just anxiety? I haven’t had Covid or a vaccine recently.

@Crikeyalmighty those are my 3 fears as well - brain tumour, MS and MND, especially the latter. The doctors keep saying those diseases present differently, but Google says twitching is MND, and there are videos of people’s muscles rippling. I’m having constant panic attacks.