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Help, advice, way forward.. Thank you.

Hi there,

Thanks in advance anyone who can help!

These are my symptoms and I’m having a brain scan to rule out MS in the next few weeks. I appreciate if anyone can relate or offer advice on way forward.

1)Twitching muscles constantly even tongue. Never stops, just don’t moan about it anymore! 3yrs+ diagnosed by nerve conduction test peripheral nerve hyper excitability
2) Painful muscles spasms particularly around back. Very painful off and on lasting 30 secs or more but frequent when going through ‘phase’ of it.
3) Suspected Trigeminal Neuralgia - 3 episodes to date very painful! Head banging pain. Coming from temple across face
4) Complete numbness in arm but only at night.
5) Balance issues and disorientation, coordination. Nothing really obvious but enough for me to notice affecting driving, breaking cups, glasses, writing, memory and mixing up words
6) Dry mouth, constantly drinking, dry nose and ears, throat? Dry hair.
7) Persistant cough, irritating dry, thickly throat, and throat wheeze
8) Something stuck in throat really annoying sensation. Really struggle with this.
9) Loads of other things - just not right!

Any thoughts would be appreciated. Feel like my body is slowly dying.

Thank you! Appreciate it.

Edit Reply

Hi Trueman,

IF - and it’s a big “if” - all your symptoms are from the same cause, and you don’t have two or more coincidental conditions, some of them just don’t fit with MS.

A lot of them could, but MS does NOT cause dry mouth, thirst, dry nose, hair etc. (Not sure what you mean about dry ears - do you mean as in scaly or flaky, or not producing enough wax, or what? Either way, this isn’t an MS thing!)

Also coughing and wheezing are not usual symptoms of MS - at least, not on the main part of the spectrum. Somebody who is very seriously affected by MS to the point of being immobilised may be prone to lung infections, but it’s not a particular hallmark of MS, as it could happen to anyone who’s severely incapacitated with anything, but is fairly unlikely in someone who’s well enough to be up and about.

The only advice I can offer is to try to be patient, wait for the scan results, and see what is said.

I would not like to try to second guess what they will be, as I cannot say from your symptoms (and neither could anyone else) whether you have MS. Only that certain things aren’t a good fit.

This is not something you can “do anything about”, other than let investigations run their course. I’m afraid that IS the way forward - there’s no magic shortcut that will get you answers quicker.

Even paying to be seen privately may not make a huge amount of difference, as yes, you will almost certainly land an appointment more quickly, but their criteria for diagnosis are exactly the same as on the NHS. If the evidence doesn’t stack up, they still won’t be able to diagnose you, so a faster appointment doesn’t always mean faster answers.

I went privately, because I happened to have private healthcare through work. Yes, I did see someone quickly, and get scans and tests quickly, but still had to wait a long time for answers, just like most other people being investigated for MS. Until all the ducks are lined up, you won’t get a diagnosis of MS - or of anything. And this is often a matter of just waiting for enough evidence to materialise - NOT how soon you can get appointments. I think my consultant believed from Day 1 I would turn out to have MS - but it still took him another eight months to prove it. It’s not something that can be rushed.

And when I say “Day 1”, I’m counting from the first day I saw a neurologist.

In retrospect, I believe I’d been ill for a lot of years before that, but had never ended up in Neurology, so never saw anyone who recognised the problem. The same can work the other way round too, i.e. just because you get sent to Neurology doesn’t always mean the problem IS neurology. There can be quite a lot of overlap between Neurology and, say, Rheumatology, so sometimes it’s a matter of luck whether you get sent to the right one first.

Stick with it, and I know it sounds like I’m asking the impossible, but try to stay calm. Particularly if it’s MS, stress and anxiety tend to aggravate the symptoms, but I’m quite sure they’re not good for any illness, so you need to have strategies for keeping calm. Whether it’s hobbies, music, meditation, whatever, try to find something that works for you.

Tina

Thank you Tina for taking the time to reply.

I’m not sure about a potential MS diagnosis. I don’t feel I fit the loss of movement aspect. And neurological tests in past have only suggested no reflexes in certain places I think. Despite being incredibly butter fingered and bumping into things as well as this disorientation/balance thing I’m pretty sure it’s not obvious MS - well not like heat I’ve read some people unfortunately suffer from.

But I’m pretty darn sure there is something going on with my muscles! The spasms and twitching is just non stop really. Has been for years now. Painful as well. The other thing that’s creeping up on me is stiffness and sore joints. Again I don’t know if this is related to MS or not.

I guess there maybe a few things going on like you suggest. It easy macho facial consultant who has referred me for brain scan. I’m still waiting for neurologist appt. Was under one years ago when nerve issues diagnosed and was labelled a ‘watch and wait’ patient. It was and is thought no explanation for twitching to date.

The throat stuck sensation has been intolerable as has cough. Just fed up feeling like I’m going mad… !

Apreciate your input here and reminding me there is no quick fix !

Hey Trueman,

How are yer?

Loved the film…

My left leg has been giving me gyp today. Feeling really heavy and been dragging a little. Tripping myself up etc.

I’ve been dx 19 years, and still mobile, still working full time. Couldn’t relate to a lot of your symptoms, but muscle spasms and twitching muscles yes. My right eye (lid) has been going stoopid the last coupla weeks. I feel lucky to not have it too serious. I adapt and cover it up the best I can. The stabbing pains are real fun…

Hopefully your scan will rule out m.s. If it doesn’t, well, join the party dude !!!

Take care of yourself,

Andy

Hi there Andy,

Oh I am just a mess really ha ha. Thanks for asking and checking in on my post.

It is interesting that you mention you do get twitching/muscles spasms. The twitching some have said they don’t get and therefore not sure if it is typical of MS? It was all the twitching that kicked me off years ago and then given a ‘watch and wait’ label by the neurologist at that time. It is just constant - hasn’t stopped in years. Most people think I am mad because they cant see it. Sometimes they are big thumpers - the twitches. But mostly its like a ping pong ball twitch anywhere over the body and all the time. Often in my arms, calves, upper back, scalp and tongue.

The spasms - how would you describe them if you don’t mind me asking? I am not sure whether to describe them as severe cramps or spasms. Maybe a mixture. But I know it is painful! And indiscriminate. Usually I get them upper back around to front. Or this really sharp sharp stabbing pain that hurts collar bone/neck down the arm. That really hurts - even to breathe and burp I found out ha ha. Then more recently sharp shooting pains down my leg from hip area.

And… now to top it off - getting some tingling left side face. Not painful like the suspected Trig Nerve issues I have had. But an icy tingle would best describe it.

Anyway, thanks for sharing and hope you are having a good day today and the sun is shining for you.

x

Thank you for your reply. Much appreicated. Took ages for me to get back online to reply! Sorry!

Yes, the dry throat etc has been suspected Sjorgen’s but the blood test came back negative. Apparently it’s possible that you can be negative on the blood test but positive on salvia gland biopsy. Im not sure if this is going to be pursued or not. But I do wonder about this… and then there is a suspected enlarged thyroid which I am waiting on ENT so the throat is probably related to that. Hopefully nothing too scary!

Can you have MS without lesions? I think from what I have read it’s a combination of symptoms and frequency of episodes that help diagnose it. I am presently labelled ‘watch and wait’ from years ago with the twitching diagnosis via nerve conduction tests. Those twitches have NEVER stopped and constant ping pongs - wakes me up at night but have learned to live with it. I am not sure twitching is typical of MS from what Ive read.

The muscles spasms are really bad - seems to be going through a maddening painful phase of them. And they are painful! Upper back around to front. Then this collar bone sharp sharp shooting pains neck and down arm. And the leg.

Ive started trying to take a diary but not sure how to right all the different things up in it! If you have any advice how to lay out a diary of symptoms for my neurologist appointment. I haven’t seen anyone for a few years - just been referred back because of the trig nerve issues and just constant being unwell. And then of course the Maxio Facial consultant referring me re: trig nerve/brain scan.

Anyway, thank you for taking time to reply. I hope that you are well today.

Hey Trueman,

How are yer?

It can’t rain everyday…

I’m fine today thanks. Back to work, and the leg feels better.

The muscle pains I tend to get are just stabbing pains really. Enough to make me react to it, then it goes before my wife asks what’s wrong?.. Occasionally it feels like someone is giving my bones a Chinese burn, twisting and squeezing it. Another feels like someone’s lifting my knee cap off after kicking the back of my knee, and there’s the stabbing pain in the back of my eye like someone’s got a hot needle. A particular favourite…

Every day’s a party !!!

But…

I’m lucky. 19 years like I said, and I’m reasonably symptom free, compared to some on here. Some days I feel a fraud. I was told to live my life when I was dx, and I’ve tried to take the advice. (Wish someone gave me that advice in relation to work, instead of giving my best years’ to unappreciative arseholes…)

Take care, Andy

Hi there. Just an update.

The results of my MRI arranged by maxio facial consultant show blood vessel pressing on trigeminal nerve and is pretty certain I’ve been suffering from trigeminal neuralgia. This consultant said he won’t take this any further as he would like a neurologist to further review scan and symptoms.

At least my pain was not in my imagination.

Suffering terribly at the moment with coordination balance and this bizarre disorientation/difficulty to focus thing going on. Alongside a buzzing kind of feeling throughout body and strange jerks. Don’t know if I’m causing them to happen or not!

Oh well waiting for neurologist now.