Pins and needles - first sign of MS?

[MojoJojo71]

For the last few days I’ve had intermittent pins and needles and a sort of numb feeling in my left pinky and ring finger and down the side of my left hand. This morning I also have a weird tingly feeling and numbness in my left big toe. My mum was diagnosed with MS about 30 years ago, first relapsing remitting and then secondary progressive and and is now severely disabled and in chronic pain. I’m aware that as the daughter of a sufferer I have about 1 in 67 chance of getting MS and I’m terrified this may be the start of it. I can’t talk to my mum about it as I know she’d be devastated if I had it too.

Anybody with MS out there willing to share their first symptoms with me? Do you think I should speak to my doctor or wait and see if it goes away? I was even googling prices of private MRI scans last night!

Bugger, all my blood tests are normal. I was kind of hoping they’d find an easy fix like a B12 deficiency or a thyroid problem.

I have to call the GP on Tuesday morning to see what the plan is moving forward. Initially he said the next step was nerve conduction tests but surely that was when he thought it was carpal tunnel syndrome? Now that I have symptoms in my foot should I push for a neurology referral?

@MojoJojo71 how are you feeling now? Have you ever got to the bottom of this? Experiencing similar and terrified

@Wobblyheart i had my nerve tests and they said it looked like ulnar nerve compression. I still get the symptoms on and off in my hand but the foot symptoms have resolved. I saw a specialist physio at occupational health at work who kindly did a full neuro exam for me because I was stressed about if and it was normal so I didn’t end up asking for a neurologist referral in the end.

The thing to remember is that most of these weird and wonderful symptoms turn out to be nothing in the end. It doesn’t stop us worrying though so best to get them checked out.

Thank you for coming back to me, I really appreciate it and really glad you have resolved your issues! I really worry I have ALS or a similar MND as have a plethora of symptoms and they are just progressing... have booked a private neuro consult but it’s not until of April. I 36 but have a young 5 month old baby and just besides myself with worry. It’s tough isn’t it

This is so weird! I have had the same symptoms and about a month ago, my left arm suddenly went limp - went to my gp who suggested ulnar nerve compression and referred me for scans etc, but then yesterday my whole left side suddenly went numb/floppy and my speech started slurring etc so I was rushed into hospital. CT didn't show a stroke but waiting for MRI now - MS has been on my mind too!

I'm hoping the MRI shows something! Glad you've got a resolution op.

@CandyLeBonBon that sounds scary! Hope everything goes well with your MRI and you get a nice simple explanation for your symptoms 🤞

Thanks - can you tell me what the nerve tests were that you had?

@CandyLeBonBon just nerve conduction tests.

Thank you for this post. My mom also has it and she is in her later stages of it which is not pleasant at all. On a positive note, when she had it she had no idea about it so she had less worry and carried on with her life. my case is different. I know everything about MS and that is dangerous. As her daughter I now live in hell of constantly worrying about MS. I passed the stage of worrying about her and now I worry about me. I have a range of above described symptoms. Occasional pins and needles around my periods, third toe on my right feet feels strange, and now I have some weird twitching on my big toe (right foot). I noticed it in mid night and ended up having Sleepless night. Dreading and being depressed have become a part of my life the last three weeks. Have my appointment with GP next week. Reading your post did help me a bit so thank you.

i agree with previous posters that it could be a number of different things. Definitely get B12 checked out - ideally you need an ‘active B12’ test, plus the metabolites, Methylmalonic Acid and Homocysteine. That is really the only way to rule out a B12 problem. Typically GPs will only do a total serum B12 test, which shows the total of B12 that is available to the body, plus also the B12 that is not, so does not always detect a true deficiency. It is also possible to have a functional B12 deficiency, where you might have good total or active B12 levels, but you also have high metabolites (see above), which means that your body can’t access the B12 at a cellular level.

B12 deficiencies can appear or get worse in perimenopause. This has been my experience - lots of pins and needles in feet / legs, visual problems (glare etc), tinnitus, anxiety, muscle weakness. I have an autoimmune B12 deficiency and a Functional B12 deficiency. Have a look on the health unlocked forum for Pernicious anaemia / B12 deficiency. There will be a lot of info about treatment etc there.

GPs don’t often understand that B12 can cause serious symptoms / issues. There have been cases of B12 deficiency being mis-diagnosed as MS, dementia, psychosis.. the list goes on.

While there are a number of causes of pins and needles, I thought it might be helpful to tell you my experience of B12 deficiency, as it is important to get it properly ruled out.