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.

@Caramel81 that's so reassuring about your neurologist saying that symptoms don't usually come and go with anything serious. I'm a bit better today- it was a work day so I was more distracted by that and only noticed a few twitches in my muscles... literally writing this now they are starting again- it must be in my head?! I was exactly the same about people with anxiety and who didn't come to work because of stress, I used to just think 'oh come on, you'll feel better if you get on and do something'. Now I'm eating my words very humbly. I never thought this would be me. I hope that is all it is.

@PastMyBestBeforeDate I didn't get the numbness last night but I did get a strange feeling almost in my head and my shoulders jumped upwards. It's not like that squeeze thing I've read about but it has made me scared to go to sleep. I half recall having the same thing a while ago but it's like a dream as I'm obviously half awake when it happens. Still got the tingly toes in my left foot getting up though.

Thank you for the links @TabbyStar

@Flopsbiggestfan thank you ever so much for this reassuring answer. I'm sorry to hear about your miscarriage- it's such an awful thing. The irony is (if it is the trauma of the miscarriage has prompted these symptoms) that I'm now less obsessed with getting pregnant again immediately. But at 40 I don't have time to hang about.

@Hazelmazel I had the bloods taken on Thursday and I'm supposed to see the GP Monday for the results and she said she would do some basic neurological tests if she felt it would be helpful. Only two and a half days to wait. I'm really hoping they come back with something definite so I'm not in limbo because it does seem to be the more I think about it the worse I get. Definitely feeling a bit wobbly on my feet though- is that a B12 thing?

@MESSING2 it is frightening, that really is the most accurate description of how I feel. How long did it take for you to get the MRI if you don't mind saying?

I have B12 deficiency which they believe is autoimmune related - my balance is rubbish and I have nerve problems too, in my hands and feet. It can give you loads of diffuse and seemingly random issues. It’s really underdiagnosed too.

@NaughtipussMaximus it's really weird because apart from the pins and needles foot thing everything else has come on so suddenly. I'm not usually clumsy like this- although sleep deprived at the moment admittedly.

Is that how it was with your B12? Or was it a slow, gradual thing? I'm not even totally sure I know what it is... I've googled it obviously. But when I was in hospital after the miscarriage Christmas Day they did my bloods after a big haemorrhage and they came back as normal. I don't know what they would have tested for exactly though. Iron? Haemoglobin. I'm so ignorant about anything scientific.

I also have MS, your symptoms could be a range of things but may just be anxiety......dont over think things, easier said than done I know....Although like the other posters my 1st symptom was optic neuritis! However my mum also had MS x

Thank you for your reply @heckythump01 did your symptoms come on gradually or all of a sudden did you get lots? And was it on both sides or just one?

Still overthinking aren't I? And I've heard that everyone is so different. I just want to be able to stop thinking about it. My hands are constantly freezing too.

Gosh OP, I had virtually identical symptoms to you about seven years ago, and was also convinced I had MS. Numbness in my fingers and toes (worse at night), numb areas around my mouth, poor balance, brain fog. I put off going to see my GP for months because I was so scared, but eventually plucked up the courage.

My GP did some quick neuro tests then and there - all fine. She did bloods, and phoned me a week later to tell me I had hypothyroidism and had to start taking levothyroxine. It took around one year before my symptoms completely went (although they were much improved after only a few weeks), but I'm fine now.

Untreated hypothyroidism can also make miscarriage more likely, so it may be related to that too.

Oh, and MS usually affects only one side of the body, at least to start with.

I had something similar 2 years ago. Started with numbness to my 4th and 5th fingers in both hands, then got it in my arms. Then my feet..occasionally in my face. GP suspected it was my spine. Referral to spine unit was done and an MRI confirmed, I have bulging discs in my neck. I was terrified while I waited that I had MS. Read up loads about it but the symptoms don’t really fit.
A course of physio really helped me. The facial numbness was actually migraines (it’s a bit chicken and egg with the neck pain/ migraines). I’m on a medication now which prevents migraines and helps with my neck pain (the pain came later). It’s all settled down now.

I hope you get a diagnosis soon.

Same as Mrs Deadlock had p&n NHS sent me for brain scans etc with no problems seen I paid to see a private dr and they diagnosed a not particularly severe vit D deficiency took tablets and all symptoms gone within about 6 months. Looking back the p&n got worse Oct - March - maybe weather related? My hands are also mostly freezing the vit D made no difference to that. Wishing you all the best 💐

I have MS and it doesn’t sound like it to me. You say you have no fatigue so don’t think it’s fibromyalgia - fatigue is a huge factor in MS too.

Hello OP! I am also an MSer. MS is different for everyone so what you're describing could be MS or it could be something else. The only way to know is to get the tests (MS is diagnosed from an MRI).

I did want to reassure you though that even if it does turn out to be MS, it isn't that bad. There are many treatments available now and new ones coming along all the time. You would never know I have it if you met me!

I have MS and have all those symptoms. But there are also many other causes for them as well. You've had a really rough time. It could be partly that, or as a PP aid. Get your bloods checked for any deficiencies.

Ps. I don't have anxiety of suffer particularly with stress.

@theconstantinoplegardener I do wonder about thyroid issues but I don't have the brittle hair, fingernails or tongue thing. I know that's one of the bloods the GP did. Plus I'm seeing Professor Regan for recurrent miscarriage and she mentioned thyroid tests too. My symptoms are definitely on both sides although maybe slightly worse on the left.

@NooneElseIsSingingMySong I have had a dodgy neck for a while lifting my DD and I've had lower back weakness for years. It hasn't got significantly worse recently so I don't know... maybe it's a disc thing?

@Gingangoolee I've been taking vit D for ages because of ttc but maybe it's not absorbing properly as PP have said. I just want to know what's going on. I feel like a different person- not like myself at all.

@icedancerlenny definitely no fatigue even though I'm tired from not sleeping. I was able to march round our village loop yesterday afternoon at pace - about 2 miles so not massive, but still. I do seem to feel better outside and less clumsy.

@Toddlerteaplease @RosieMapleLeaf this is what I'm struggling with, the fact I'm looking for things to compare but there's no real answer because I know symptoms are different for everyone. Thank you for reassuring me that it's not the worst thing in the world. I have never suffered from stress and anxiety before that has been like this- just the usual strains of a busy job etc. I've never been like this.

As @RosieMapleLeaf says. It's really not the end of the work if it is. The treatments now are amazing!

My MS we discovered incidentally on an MRI scan for a research study. I thought al those yes symptoms were normal! It didn't really cause an issue until 18 months later.

@glowingtwig I didn't have brittle hair, fingernails or tongue issues either. Nor did I gain weight, which is another common hypothyroid thing. The symptoms of hypothyroidism are many and varied, but most people don't get all of them. Good luck, I hope you get the answers you want soon.

Good luck with the results and the GP today @glowingtwig let us know how it goes!

I've got mine in about an hour so hopefully should start to get some answers by the end of the week.

Oh and my hands are also constantly freezing!

@glowingtwig My symptoms came on very gradually - so gradually that I didn't even really notice - even the fatigue crept up gradually. That's actually the worst thing about it. The clumsiness was one of the first thing I did notice, actually. I used to be really sure-footed and good with my hands. There's Huntingtons in my family so when it started years ago, that was what I thought of at first, but presumably it's not that since I'd be very incapacitated by now if it it had been the first signs of HD.

I do hope your appt goes well today, and you get some answers.

The trouble with MS, in my opinion, is that it's completely different in every person who has it - there is no set pattern of symptoms. I was diagnosed 22 years ago and my first symptoms were optic neuritis quickly followed by loss of balance and total body numbness. I've never been prescribed any drug treatment and to look at me, you'd never know. I just wanted to say that there is no definitive set of symptoms and even if it does turn out to be MS, it's not forced to be the end of the world. I'm happy to answer any questions as best I can.

Thanks for your support everyone. Bloods showed nothing at all. All neurological tests she did were normal. GP said it's anxiety, stress and panic attacks after a traumatic miscarriage. She also mentioned PTSD.

I do feel better since seeing her - less twitching and the night horrors have subsided. She said that if it was still really upsetting me in a few weeks go private to see a specialist as the NHS waiting list is so long. So I think I'll see how I get on and she has given me several numbers.

Good news :)

Oh, and MS usually affects only one side of the body, at least to start with.

MS presents and behaves differently in each person though. There isn't really a place for the word 'usually'

A lot of your symptoms I had recently and I too thought of MS or similar.
Turns out I was very low on ferritin. So always worth checking.
Glad you’re all clear OP.

I too have MS. It started with a hot, heavy, numb right leg and when kneeling down on a hard surface it felt as though I was kneeling on a thick Axminster carpet on both knees. Miscellaneous other symptoms have been Lhermitte's sign (like little electric shocks running down your spine), the MS lower rib squeeze, sensation of cold water running down my calves and mainly fatigue. Touch wood no optical issues. I was diagnosed in 2005 (at about 45 yo) and refused drug treatment (although I did have my metal teeth fillings removed!). I used to have regular episodes although they have reduced over the years - now apart from the tiredness a "dropped foot" after exercise are the main issues.
As other posters say - MS isn't the worst thing to have. Hope you get sorted!