Does this sound like MS? Please help

[glowingtwig]

Hello,

I'm suffering from lots of weird symptoms and I'm terrified it's MS or MND. I started noticing some of them in early pregnancy recently (pins and needles) so had put it down to that and hormones/early carpal tunnel as I had that with DD, but I've since had a miscarriage and symptoms have ramped up, over a few days really...

Pins and needles in both hands when waking up through the night/in the morning

Buzzing, fizzy feeling in hands
Random tingling feelings including random tingly itchy feeling above top lip at night
Pins and needles/numbness in left toes when getting out of bed but just for a few paces
Muscle twitches randomly all over my body, calves, thighs, behind knees, biceps, forearms, fingers, tummy, neck - basically everywhere. These are worse
Mildly stiff muscles and back pain (back pain really bad at the moment from lifting toddler badly)
Foggy brain and difficulty concentrating.

I'm really scared. My GP is good and I have blood tests Thursday for tons of things but I don't think it's a vitamin deficiency as I eat really healthily; she's testing for thyroid and diabetes as well. She did say that it's very likely to be stress and anxiety after suffering from two miscarriages in a short space of time and juggling work and childcare with covid. I told her my fears about degenerative illness and she said 'it's very unlikely' and 'it won't be'.

I don't notice them as much if I'm distracted with DD or working but at night going to sleep and in the evenings they are so pronounced.

Has anyone suffered from these things and it turned out to be anxiety and stress? Or do these things not actually sound like MS or MND? I feel totally tormented, I can't sleep and I'm really scared.

You are doing the right thing by seeing your Gp who can refer you to specialists if needed - hang in there lovely google is not your friend if searching for answers atm so be careful and try not to read too much into things at present - the mind is so powerful it could simply be stress even, learning how to stay relaxed might be all that’s needed as no medical answers as yet be kind to yourself x just to put your mind at rest often the eyes are one of the first signs of ms and you have no symptoms here at all but alas this is just from experience rather than fact

I have seen lots of posts on here saying that symptoms like that were caused by stress/ anxiety. Or vitamin deficiencies. It doesn’t seem uncommon actually from what I have read.

So sorry about your miscarriage.

Your GP will have seen this before, she knows what she is talking about.

I haven’t had your specific symptoms but I recognise the middle of the night panic from my own middle of the night panics - also health induced ones - and the feeling is grim, so I do sympathise. Find a nice childhood book to read amd have a cup of sweet tea?

These are my symptoms (amongst others) and I have Fibromyalgia. Misunderstood by many (though thankfully not by (most) doctors these days as there are now diagnostic tests), debilitating but nowhere near as serious or scary as MS/MND.

Please mention the Brain Fog to your GP. You will likely end up with a basic neurological examination by GP and a referral to Rheumatology

Best of luck, please let us know how it goes x

Oh I am so sorry that you are going through this.

Yes I have had similar symptoms a few years ago and it turned out to be stres//anxiety. Tingling and numbness were my main symptoms but there were other things like twitches.
Like you I had consulted Dr Google and was worried I had MS. I say “was worried” but actually it was an all consuming fear, I was so very terrified, every symptom was amplified and so the cycle continued.
My GP did blood tests and some motor skills tests with me. She tried to tell me it was stress/anxiety as my FIL was dying at the time but I was adamant that it wasn’t and she did give me a neurologists referral.
During the wait for my neurology appointment (be warned it was a 30 week wait) my fear of MS became so big that I started having panic attacks. Another doctor at the surgery mentioned to me that in his 30 years of experience the first signs of MS tended to affected the ocular nerve and a persons eyesight. This brought me comfort as that was something I had no issues with......well that and the low dose of diazepam he prescribed me for when I felt the worries rising!
Several years down the line and that period of time and symptoms all feel like a bad dream. I can’t quite believe any of it was real.

I e been through this. However extreme this is, anxiety can be the cause of it all. Of course, as you get more anxious about the symptoms, the worse they get.

Another strong possibity that could explain your symptoms, even more than MS is VitB12 deficiency.

Thank you all for your replies. I'm just grasping on to anything of anyone who says I'm likely to be fine.

@user1471464702 you're right, Google really is not my friend. I've spent so long googling that now all the different conditions are jumbled up in my mind and I can't distinguish between any of them. I'm sorry to read you have experience of the eye issues. The only thing I can think of about that was that I had a sharp pain behind one of my eyes when I was crying a lot in the throes of miscarriage?

Thank you @HumphreyCobblers I do trust my GP but also can't get my head around how stress can cause all this. I've been stressed before but not felt this way. I took your advice and read Danny the Champion of the World. It really is the worst, grim feeling.

Thank you for sharing your story @CostaDelCovid , I'm sorry to read this- my SIL has fibromyalgia but I don't seem to have any fatigue- (apart from being tired after not sleeping well). It's just the pins and needles and the twitching. Can those present as fibromyalgia without pain or fatigue?

@MoiraRoseWigCollection thank you so much for your reply- it's so awful isn't it. I feel EXACTLY as you have described. It's so true about the amplified symptoms. I'm now feeling clumsy even though I'm not in reality. Typing I'm making more mistakes, stumbling over words then start to panic again. Your words about what the neurologist said really give me hope (although I'm worried about staring at screens all day now WFH will start giving me those symptoms). The GP said she would prescribe something for the anxiety but I want to try again for another baby as I'm now 40 so I'm afraid to put chemicals in my body.

@dontdisturbmenow that is interesting about the B12- oh I hope my bloods come back with something like that. I only quite recently stopped breastfeeding so I wonder if I'm lacking in some nutrients due to that? Although I do have a varied and healthy diet.

I just want it all to go away so I can rid myself of this dreadful feeling that my lovely life is about to fold beneath me.

I do have MS.
The first signs that led to diagnosis were pain and numbness in one limb and falling over my own toes.
I do get twitches and tingling but they aren't significant. I haven't had optic neuritis yet either.
I would be surprised if it weren't anxiety. I also have that.

@PastMyBestBeforeDate thank you for your kind reply. I feel awful that I'm moaning about feeling this way when you actually have the condition.
Would you mind sharing where you get the muscle twitches and tingling? Mine are all over my body and tingling in hands and feet but mainly when I'm not doing anything.
I feel like I'm going a bit mad

@glowingtwig don't feel awful :) Am working but will come back later.

I've been where you are OP. It was horrible. I had pins and needles in places I didn't think it was possible to get them, and benign fasiculations (twitching).

It turned out to be a severe vitamin D deficiency (despite healthy diet) and anxiety.

Your GP may not have tested for vit D as it takes 3 weeks for results to come back, so you may have to ask for this.

I can guarantee your GP will have seen this many times before.

I'm going through something very similar OP.

It started with pins and needles and numbness in my feet before Christmas which has gradually got worse. Now my ankles don't seem to want to work properly, my calf muscles are tight and painful and I can't walk without holding on to something. I also have muscle twitches and weird zaps that make my legs jump.

I have blood tests booked for next week. My main fear is MS but I'm hoping for a vitamin deficiency as my diet has been absolutely horrendous recently.

Please feel free to PM me if you think we could give each other a bit of a handhold through this!

@PastMyBestBeforeDate I would be so grateful if you could come back, thank you.

@MrsDeadlock she said she was testing for 'everything' but seemed to think we could discuss results on Monday- but perhaps not that one. I have been taking vitamin D as had been pregnant, but maybe not as high a dose as I need.

@cricketmum84 I will do- thank you. Handholding would be good I think.

I have MS, was diagnosed a few years ago. My first symptoms were very different- I had what felt like a blocked ear and terrible vertigo, at one point I couldn't walk without holding onto walls!
The symptoms you describe don't sound like anything I've experienced with my MS. You are seeing your doctor and that is the best thing. I spent endless hours stressing myself out by trying to self-diagnose via the internet and I wish I hadn't because all I did was make my anxiety levels sky rocket.
I also think it's worth adding that, in my experience, MS isn't as bad as I thought it would be. I have bad days but I've been very fortunate to have benefitted from some incredible treatment (MS treatments are advancing all the time) so most days I feel totally fine and nobody would know I have it. I guess what I'm trying to say is that lived experience sometimes isn't half as bad as the terrors we imagine when we don't have all the facts. I'm very sorry to hear you've had what sounds like an incredibly stressful and difficult period in your life; it is likely that your symptoms are stress and anxiety manifesting themselves physically. But see your doctor and take it from there and in the meantime, as trite as it may sound, do try and be kind to yourself (and stop Googling!).

I was absolutely certain I had MS or MND because of all the symptoms you have listed. My GP kept telling me it was bad anxiety but she eventually sent me to a neurologist as she could see I wasn’t going to accept her diagnosis. He didn’t seem the slightest bit concerned when he saw me but he still agreed to do an MRI to rule out MS as I was in such a state about it. It came back completely normal. He told me that twitching and pins and needles is only concerning if it’s one area of the body and it doesn’t go away. If it’s in multiple areas of the body and comes and goes then he said it’s 99% of the time something like an anxiety disorder, bad stress, anemia or low b12 etc.

A friend of mine had exactly the same symptoms as you OP. She was so worried and had various tests - which couldn’t find anything.
She was tired (young children) and increasingly stressed about her symptoms.
Symptoms lasted around a year and eventually went - apart from the occasional relapse. She still has no idea why she suffered - perhaps post viral illness?

Just for the record I had episodes of vertigo. I was very sceptical it was stress when I felt like I could fall over at any moment. But indeed it was - it was tied up with the muscles at the back of my neck being really tight. The symptoms were absolutely real though. A physiotherapist managed to get the muscles unlocked and the symptoms just vanished. My husband was having cancer treatment at the time and it was a very worrying time and made worse when I was too dizzy to drive.

Ah OP,
The top lip being numb is a good indication of anxiety.

I have MS and really, it isn't so bad so even if it is MS don't panic too much. Treatment is amazing these days.

@glowingtwig just grabbing a quick window. So tingling tends to be down my back and in my toes but I also have poor circulation so the toes is almost certainly down to that but it also shows up when I'm getting panicky. Twitches can be anywhere but mostly my legs. I do get 'electric shock' type feelings in extremities which almost certainly is the MS.
As other people say, MS is absolutely not the worst thing to be diagnosed with. Mine is getting worse but I'm still working and mobile in my 50s. I can't walk far but that's pretty new. Lots of people don't even know I have it!

It could be B12 deficiency. You can get this even with a great diet as you can have an immune system issue that means you can't absorb it. Fingers crossed it's something like that - your GP will have tested for this, I expect.

I recently had the exact same symptoms with folic acid deficiency. Have had it several years ago but then I felt extremely tired, this time it just went straight for my neurological system.

@CanNotStandTheBull I get it through the night waking up, like an itchy tingling feeling just under my nose and above my top lip. Do you think it would be anxiety if I'm getting it on waking? I've had it a good while but didn't think anything of it til now. X

I also have MS and my real issues started with optic neuritis as this is one of the main symptoms that lead to diagnosis.

I did have pins and needles / numbness in my hands before that but it wasn’t very severe or long lasting.

Really MS is well controlled now and apart from tiredness and flare ups you wouldn’t really know I had it.

I have MS and like GettingTooOldForThis the optic neuritis was a main sympton leading to diagnosis. Before that, anosmia (burning smell) was present and that was the start.

I didn't/don't have any of the symptoms in your list, glowingtwig but I would really caution you to stay away from whatever symptom-checker you're using. You have a good GP, let them do their thing and try not to worry. Worry and anxiety give me twitches and it's not an MS-thing for me.

As already said, there are some very good disease-modifying treatments now, I've been episode-free for three years now.

Take care and please try not to worry. Worrying never, ever helps anybody with anything.

@PastMyBestBeforeDate thank you so much for taking the time to tell me this. Mine seems to be hands, feet and lower legs. I'm constantly cold as well unless I'm out for a walk my hands and feet are cold... maybe I have poor circulation and that's also causing these strange feelings. The tingling above my lip at night is really freaking me out though.

@NaughtipussMaximus oh I didn't know that, I thought that as long as you ate well you'd be ok.

@TheCanyon I've taken pregnancy vitamins for 8 months so thought I'd be ok with vit D and folic acid but maybe not if my body isn't absorbing it.

I'm wondering if this has caused my last two miscarriages? Or maybe thyroid?