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?

I've been having visible twitches for about 30 years! I'm fine! Look up benign fasciculation syndrome.

Burning and other sensory symptoms are not signs of mnd, which is a disease of 'failing not feeling'. I lost my dad to mnd and to have twitching as your first symptom would be very unusual, especially if it's all over your body. I twitch a lot, ironically due to the stress of losing my dad, mine comes on when I am anxious, run down or dehydrated. It's an incredibly common symptom

Are you on any antidepressants? I take 2 different types and have had muscle twitches ever since starting them. Particularly in legs but can be anywhere - once had one on the side of my hand that kept making my little finger move!

Could this be health anxiety? It's real & it's awful, I've been there. Highly unlikely to be anything sinister but that doesn't stop the fear and the more stress you have, the worse the symptoms seem to be.
The only advice I can offer is to go back to gp and consider anxiety medication/therapy once symptoms are all investigated. I'm sorry for all you're going through.

Hi OP, these symptoms could absolutely be functional neurological disorder. It's more common than people realise, and can cause muscle twitches (in fact, I think it might be a more common cause of muscle twitches than an underlying neurological condition). Doesn't sound at all like MND, so try not to panic just yet.

Yes I do have health anxiety, I’ve had it since I was about 7. But I wasn’t anxious when the symptoms started, although I’m very anxious now. So I keep thinking how can it be caused by anxiety when I wasn’t anxious when it started? Also these symptoms seem very severe to be “just” anxiety.

No I’m not on antidepressants. I refused meds because I was worried I’d develop side effects and feel even more scared, and be unable to distinguish the side effects from the original symptoms.

Functional neurological disorder has been mentioned. But what would cause that, I was in perfect health and then suddenly these symptoms started, there was no trigger.

@Blinky21 sorry to hear about your dad. It’s very kind of you to help put my fears to rest. You have first hand experience so you saying it doesn’t seem likely has helped a lot.

Thank you. I’m just really scared because I’ve got burning and stiffness as well as twitching. It seems too severe to be anything benign?

Hi ive got all theses symptoms
what was your outcome? X

They were two separate conditions. The burning and twitching muscles all over which have lasted for months, still no diagnosis for that. And the twitching temple and burning face, which turned out to be trigeminal neuralgia caused by Covid (I developed coughing and runny nose about a week later, and the temple twitching and face burning went away after I recovered).

What symptoms do you have?

I believe you have made posts on this issue numerous times.

The issue you said before was your health anxiety.

All relevant medical tests have been done.

You now need to deal with your health anxiety.

As mentioned before repeatedly posting for reassurance is feeding the anxiety and you need to avoid it.

I would ask people replying - would you offer diet advice to someone who was anorexic because this is similar.

https://www.nhs.uk/mental-health/conditions/health-anxiety/

Fuck off. I haven’t posted about it again. I’ve replied to a comment from someone asking what I was diagnosed with.

Hi mine started out after a virus with leg pain , then burning feet , then all over body twitching this massively scared me , had bloods done low in folic but I shouldn’t of googled been a right mess for days and twitching and foot pain 24/7 x x

DH gets benign fasciculations. Been married 28 years and he’s always had them so I think it’s ok. He exercises a lot and sometimes his muscles seem to continue even at rest. He’s always had the nighttime twitch when he’s dropping off to sleep. Drives me mad.
When I’ve had eye twitches that go on too long I’ve always found magnesium helps. I think you need to believe doctors over Google.

Unfortunately I was just hit wirh the als information and just couldn’t move past that! x been tearful all week barely functioning - burning feet is 24-7 and the twitching rips through all my body god it’s miserable x

My understanding is this is not how ALS presents. It involves painless weakness and starts in one body part then spreads. It does not involve sensations such as burning. Lots of benign conditions involve twitching. Hope this helps your fears.

Yeah thank you! Guess I’m looking for the reassurance! Feel ok one minute then I get a twitch non stop then spiral I guess thank you x

It’s funny you should say your symptoms started with a virus because so did mine. In the end I did see a private neurologist who said this sort of thing often starts with a virus which upsets the nervous system - campylobacter is a common culprit, and the burning and twitching can last for months or years afterwards.

Anyway he was 100% certain it was not MND because I had no muscle weakness and it was all over my body not just in one part. He said twitching is a very late symptom of the disease, it’s generally not how it starts.

He also said anxiety was exacerbating it. The original issue was not caused by anxiety, but the symptoms made me anxious and that made it worse.

Thing is I’ve gone from having 3 jobs to barely being able to do one, I could cope with the rest but the twitching is causing me huge anxiety I never had this anxiety as bad as what it is as I can barely function , taking time off working feel massively depressed , but I do have the burning in feet all the time , I’ve stopped taking to people about as they might have the one of twitching but to have it constantly with leg and ankle pain is just miserable x

It’s true the anxiety has made it awful heart palpitations now ha x obviously I notice more when I’m not moving or resting such a strange feeling and so unpredictable where the twitches come from- thank you for your messages don’t feel so alone x

In my 20s I started getting palpitations. They came from nowhere. The more I thought about them the worse they got. Went to gp and he did a heart trace, listened to my heart etc. Asked if anything had happened. I had witnessed some violence towards a family member weeks earlier but didn’t connect. I walked out of the practice and didn’t have any further palpitations. Mind and body are more connected than we think.

My DD23 had a horrible flu type illness a few months ago and got awful sensations in her legs afterwards. I mentioned the virus and she hadn’t connected the two. Sure enough after a week or two and some magnesium it went away.

Yeah there is some truth in that, trying to pull my self out of this hole I feel ok one minute next I get another twitch n then another then feel like I wanna cry and leg pain bloody annoying! managed to get out today so that’s something, thank you for all your replies ❤️

Re the iron and ferritin this video was informative, others in the series too: https://www.youtube.com/live/x4XlD4QrqIM?si=2dn4wure1njF11RW

I was low folic but I have terrible pain in the sole my foot and burning so done with this now! x not sure if low folic could be responsible for this seems unlikely x

Well ain't you charming. Agree with the op. F*ck off