Page 2 | Does this sound like MS? Please help

Original poster

glowingtwig · 27/01/2021 14:20

I appreciate so much people who have MS coming on to reassure me, @LyingWitchInTheWardrobe @GettingTooOldForThis @coataddict @PastMyBestBeforeDate (hope I haven't missed anyone).

My husband says the same about the worrying. He says I'm doing as much as I can at the moment and trust the GP and I know I need to stop. And I try. But then I get a twitch or remember about walking in to the side of the baby gate or.. or... or...
it's like my finger on my phone is a compulsion to look up silly things. Just now I was comparing my knee reflexes to ones on YouTube with people who have MND. I mean, what do I even know about this? I'm not a doctor. I'm zooming in on YouTube watching people's legs jerking about and clonking myself on the knee with my phone. RIDICULOUS.

OP posts:

TheCanyon · 27/01/2021 14:33

The thing is, you'll be winding yourself up even more by seeking out validation via Google and YouTube, which really won't help. I have a progressive neurological condition and if I think about it or am stressed/excited, you know what happens? It gets 100 times worse.

Trust in your gp to get your bloods and explore what's going on.

StormBaby · 27/01/2021 14:47

My one friend with MS started with headaches and eyesight symptoms. I have a trapped nerve and bulging disc and have lots of muscle twitches and a half numb back, so it could be that.

WilsonMilson · 27/01/2021 14:49

You sound just like me about 9 years ago. I worried myself inside out for months that I had MS or MND.

I ended up going private to a neurologist as I couldn’t bear to wait for the NHS. Ended up with a clear mri scan, normal emg tests too. Blood tests showed only a slightly low b12.

I had tingling and weird numbness, not true numbness in fingers and toes. Electric shock type sensations on the underside of my arms if I touched them. Also had muscle twitching which scared the bejesus out of me and turned me into a nervous wreck convinced I had a terrible neurological disorder. Googling did not help of course. I become a shell of myself with worry.

This went on for a few months until all tests were done. I ended up supplementing with b12 sublingual 5000mcg a day due to the lowish b12 (not enough to warrant injections). Within a month I was normal again and to this day I’m fine.

WilsonMilson · 27/01/2021 14:52

Honestly, I did all the knew reflex tests too. Did the stroking the underside of my foot and convinced myself my reflexes were off. It’s ALL anxiety. I didn’t recognise myself after a while of obsessing. I lost weight, I become withdrawn.

All over NOTHING. Don’t underestimate what your mind can perpetuate. Definitely get bloods and even an mri and emg tests. But I’m sure you are absolutely fine and I’ve been exactly where you are. Xx

WilsonMilson · 27/01/2021 14:52

Knee*

LyingWitchInTheWardrobe · 27/01/2021 14:56

glowingtwig... this is a good thing to remember when you're over-focusing on something: When you're holding a hammer, everything looks like a nail...

Put the hammer down for a bit. It's going to be fine, whatever it is.

Catsneezies · 27/01/2021 15:08

I had these same symptoms a few years ago and also had blurry vision in one eye. I remember how all-consuming the worry was and I was convinced it was MS or something worse.

As soon as I got the all-clear after multiple MRIs and nerve conduction tests the symptoms almost completely disappeared. It was all connected to stress and anxiety. The blurry vision was caused by dry eyes and not wearing my glasses enough!

While you are waiting for test results/referrals do all you can to help you relax. I had got to such a state of anxiety I was unable to relax at all and I think my body just couldn't cope any more. Whatever helps, find deep breathing exercises, have a bath, go for a run, look up hypnosis for anxiety on YouTube, distract yourself with TV/films/books/knitting/painting/wine!

I really didn't believe that what I was feeling was physical symptoms of anxiety. I didn't realise that my brain could have that much impact on my body. The thing is, once you start focusing on a physical symptom it gets worse and then you worry more, focus on it more and then it gets worse again, its a vicious circle.

Redannie118 · 27/01/2021 15:13

My BIL has MND. His started with him dropping his fork while eating. GP thought it wasa trapped nerve but it didnt get better. Then he kept dropping his pen at work and not even noticing. He had his shirt off one day and my SIL noticed the muscle in his shoulder looked sunken in. It all happened very quickly, over just a few weeks and he had no twiching, tingling stinging or burning at all. I hope this helps re assure you a little :)

Bumblesbumbles · 27/01/2021 15:23

My symptoms of coeliac started with this and no gastro symptoms so may be worth testing for it (blood test). As others have said good to look at B12 too. Maybe calcium levels too

Original poster

glowingtwig · 27/01/2021 17:13

@TheCanyon I think I might feel better when I've had the bloods taken tomorrow as I'll feel like I've taken a step to getting some information. I know you're right.

@StormBaby I do have a terrible lower back and find it hard to turn over in bed and things. Maybe the foot thing is a nerve abc everything else is anxiety radiating from that?

@WilsonMilson this does sound like I feel, worrying myself inside out. Can you remember the rough cost of the private MRI? That's so interesting about the slightly low B12. Maybe I'll supplement in case it's that.

@LyingWitchInTheWardrobe that does make perfect sense doesn't it x

@Catsneezies I definitely need to get some distraction techniques. We just went for a long walk just now and I didn't notice anything really for the whole hour we were out. Then back in the house and the twitching and tingling has started again.

Thank you @Redannie118 that does make me feel a bit better. I hope your BIL is coping ok.

That's really interesting @Bumblesbumbles I'll mention that, too.

OP posts:

TabbyStar · 27/01/2021 19:25

Benign fasciculation syndrome, stress and anxiety being a major cause. I've been there too (as has everyone else if you join a Facebook group!)

Hazelmazel · 27/01/2021 19:51

It really does sound like it could be B12 deficiency - there are a couple of potential causes of this and unless you are vegan, they are almost all absorption issues so it is irrelevant how good your diet is. I have pernicious anaemia which is the autoimmune cause of this and had a lot of neurological symptoms I didn't even realise were symptoms until they went away again. Mine started after pregnancy and I put the exhaustion down to having a new baby for a while.

MotherExtraordinaire · 27/01/2021 21:39

@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.

Hi, Now I can't say that you or don't have. But I have been suffering with really bizarre symptoms. Including the pins a d needles, twitching in a number of places, intense tinnitus, swallowing issues and then it culminated in suddenly not being able to walk, and it took me 8 weeks to be able to do the school run again! GP suspected MS. However, after scans and bloods, I have a number of lower back issues including osteoarthritis. So better than MS, but not better than nothing being wrong.

Good luck.

MotherExtraordinaire · 27/01/2021 21:40

Oh and Ps, I also have very low vitamin d, b and folic acid issues that are unexplained.

Original poster

glowingtwig · 28/01/2021 07:31

Thank you to everyone who has replied. I was feeling a bit better reading them through.

I've woken up in such a state though. I did get a better sleep but woke up at 3am with a numb hand again- I've realised it's not so much pins and needles but a numbness up the side of my hand that goes away when I move my fingers. Then I woke up again with my nose tingling and feeling like it was very slightly twitching and tingling feelings down to my lip and up my cheekbone. And I just thought 'I know this is MS'. How can this be anxiety if I'm waking up from sleep with these symptoms?

And I can recall having this same sensation - like a tickly feeling- on the top of my nose a few times a while ago.

I feel like I honestly can't cope and I don't know what to do at all. My husband has had to go to work, no one can come over, I can't see my mum. What am I going to do?

OP posts:

Flopsbiggestfan · 28/01/2021 08:07

I just wanted to say how sorry I am that you are feeling like this. It must be so awful worrying like this, with the other stresses you have had recently too. I obviously can’t say whether you have MS or not, but I do and nothing you describe are like MS symptoms I have had.

With MS the symptoms are caused by your immune system attacking the coating of nerves in your brain and spinal cord, causing damage in how the messages are transmitted. Hence symptoms such as loss of vision, balance etc. This can repair but takes time so in a relapse things will be constant until it has repaired. So numbness will last consistently for weeks in the same place until it recovers. As yours is jumping around and getting better when you move fingers etc that sounds very different to my experience of MS.

The other thing I wanted to reassure you of is that MS is really not the end of the world. I was diagnosed at 30 after two quite significant episodes of optic neuritis. Since then (5 years) I have been on drug treatment and have had no further problems and no changes on mri scans. I have 3 children, work and exercise regularly. You would never know. It really isn’t the disease it used to be at all.

I hope you are ok. Anxiety can be horrible. While I was waiting on my diagnosis, I had lots of symptoms like yours and the neurologist assured me that none of them were likely to be anything to do with my MS at all. He was right. They haven’t come back since!

Caramel81 · 28/01/2021 08:07

I’ve had the tickling feeling on the top of my nose literally hundreds of times and I’ve had an mri etc to check for ms and it was completely normal. Neurologist said tingling especially in areas of the face is one of the most classic anxiety symptoms.
The numb hand could be carpal tunnel from being on your phone a lot. I get it now and again too and so does my DP if we have been holding our phone a lot. It irritates the nerves from repetitive strain and can sometimes go numb for a few seconds. I’ve woken up in the night from it a few times before and it goes away as soon as I wiggle my fingers. Neurologist told me if numbness was caused by MS then the area (such as your hand) would stay completely numb for a few week during a flare up without coming and going. He wasn’t concerned about numbness that disappeared when moving.
You sound extremely stressed and anxious (I think most of us in this thread have been there before). My anxiety was crippling and ruined my life for 2 years as I was getting myself in such a state and would not accept the fact it wasn’t something serious. Try and do something really calming like lying in a quiet room for 20 minutes doing deep breathing and relax your whole body and see if untensing and de stressing helps your symptoms go away for a bit x

Original poster

glowingtwig · 28/01/2021 09:08

Thank you so so much did replying @Caramel81 and @Flopsbiggestfan I can't tell you how much better reading that about the numbness is. So it doesn't matter if it keeps coming and going in the same place? So every morning the bit on the bottom of my foot is slightly numb/pins and needles but two or three paces and it's gone and doesn't come back until the next morning.

Similarly the numb hands, always during the night on waking or straight away in the morning, no matter what position I'm in. But then goes after a few finger wiggles and opening and closing my hand. Some days/nights I don't get it, sometimes it's the right, more often the left.

The nose thing @Caramel81 I mean it's the tip of my nose sort of underneath and on top and it's sort of tingly and tickly. The same with the area above my lip. I had thought that I was growing a moustache with getting older, that's what it feels like- a hair growing and poking through the skin. It had only been through the night on waking but now I can feel it in the day although that does come and go too.

@Flopsbiggestfan did you have your children before or after diagnosis if you don't mind saying? Another thing is that I'm worried about not being able to have another baby after these miscarriages and now what I'm going through makes me feel that's even more impossible.

I feel like since I started thinking about going to the doctor with the numb feelings everything has ramped up, particularly the muscle twitching which is all over my body but mainly thighs, shoulders and calves, both sides. I'm now wondering if I'm feeling weak but that might be because I'm so worried and can't eat.

OP posts:

Caramel81 · 28/01/2021 09:31

That’s exactly how the tickling tingling sensation felt on my nose and top lip. Also had it on my head and it almost felt like bugs crawling on me. All classic signs of bad anxiety and stress. The more you think about things and google symptoms you will feel worse and worse. I know it’s easier said than done but you need to try and find ways to relax and you’ll find your symptoms won’t be quite as bad each day. Step away from google too as it will make your thoughts spiral out of control.
My neurologist said if any twitching/pins and needles comes and goes (even if it’s in the same place whenever it happens) it is 99% of the time nothing serious.
I used to think an anxiety disorder was just a made up thing for attention seekers. After I lived with it for a couple of years and had a million physical symptoms I now realise how debilitating and unwell it makes people feel. It’s truly awful! Good luck x

PastMyBestBeforeDate · 28/01/2021 09:48

I will second what Flops said about numbness. When my fingers went numb, they stayed numb. For some of my fingers that's been permanent. For other bits of me it was temporary as in 3 weeks.
The night time numbness does make me think of carpal tunnel problems.

TabbyStar · 28/01/2021 10:19

Read this OP https://en.m.wikipedia.org/wiki/Benign fasciculationn_syndrome

Or join this group, it's full of people with the same issues! https://m.facebook.com/groups/854180221302634?group vieww_referrer=search - should give you reassurance!

Flopsbiggestfan · 28/01/2021 12:00

So I had two of my children before diagnosis. I had my first relapse when my second child was a year old. I then went on to have my third and started on a treatment shortly after she was born. I have recently swapped treatments as there is now one which is safe in pregnancy and am expecting a baby in June. I had a miscarriage between my third and this pregnancy so I’m not surprised you are feeling rubbish and anxious without these health worries too.

My neurologist was very supportive of our decision as MS is usually quieter in pregnancy and pregnancy has no long term impact on how the disease progresses. Well that is what he told me anyway.

In short, even if you did have MS you would be just as likely to go on to have healthy pregnancies as any one else of a similar age.

I think the fact your symptoms started during pregnancy also is a good sign that you don’t have MS, as that is not that common.

Hazelmazel · 28/01/2021 13:25

@glowingtwig I used to wake with a numb hand every morning which would wear off quickly. Numb and tingling hands and feet are classic signs of b12 deficiency along with crawling or odd nerve sensations.

How soon should you get your blood test results through?

MESSING2 · 28/01/2021 13:30

I had exactly the same symptoms as you 3 years ago and was convinced it was MS. I didn't have any loss of strength so I think that means MND is ruled out. Blood tests didn't reveal anything, so I had a brain MRI which came back clear. Neurologist said they are possible stress symptoms, and in fact they did subside after a few months. It was frightening though, my sympathies.