Hi everyone I’m new here ! I was diagnosed last year after an MRI and LP. My consultant said MS was present but I was at the clinical isolated syndrome stage. Apart from tingling in my feet every now and again and also l’hermittes sign I could forget I even had it, so few were my symptoms. Two weeks ago after a cold, it changed and I’ve now got tingling pretty much constantly in legs and feet, don’t even need to bend my neck anymore, it’s just always there. No pain though, never any pain. Feel like I can’t talk to anyone as I don’t want to stress them…I’m freaking out and can’t seem to find anyone in the Internet forums who has the same as me…any help is v much appreciated!
I don’t have the same as you, so can’t help there. But I would suggest maybe going to your GP to refer you back to consultant. They might be able to help, and it’s always good to get these things noted down.
Also, you can always chat to people here on the forum. Also, the MS Society helpline is wonderful - even if you just need to talk out your feelings with someone -
- 0808 800 8000
Hope you’re ok xx
Wow - that writing looks nuts!! The number is 0808 800 8000
I haven’t been dx, but I have constant tingling/numb feeling etc from the waist down. I can’t really offer you any advice, but just wanted to say I sympathise as I know exactly how annoying these symptoms are.
Do you have an MS nurse you could talk to?
I was diagnosed about 10 months ago after LOTS of strange symptoms, hospital visits etc. About 2 years ago, my feet went tingly and fuzzy which graduated to my legs. I then started getting the electric feeling when tipping my head forwards. This bout of symptoms fortunately led to the round of investigations that finally got me my diagnosis, not good but having been investigated for a brain tumour twice, it has turned out to be the lesser of two evils!
My legs have never gone back to normal, some days are better than others but if I walk at any speed or distance they go wild! I do not have any pain either and I can walk perfectly normally, its just a strong and very distracting sensation! Like you, this is the only lasting symptom I have currently. I asked my doctor about medications to stop it and he gave me tegretol, it worked brilliantly but unfortunately I had an adverse reaction and had to stop taking it, worth a try though? I hope it clears up soon x
I have permanent tingling sensations in both arms and hands and to a much lesser extent in my feet. I notice it if I am tired or if I sit on a hard seat, as it is more likely to flip into pins and needles. My feet are also less sensitive generally than they used to be.
It doesn’t bother me so I haven’t asked about treatment, but if it does bother you, speak to your GP.
I had tingling for a while which turned into pins and needles after 6 months now it’s stiffness/tightness in feet hands and legs been like this a year now so I’m used to it.
thanks everyone for your replies. Instead of it going away like I’d hoped, Im now numb from torso down and the pins and needles are strong! Also legs and arms feel heavy. Really want to know if this is a flare up and it will die down again or if this is it now but I guess there is no way of knowing!
Im going to get another scan soon, maybe that will shed some light
Thanks again everyone, wish u all well! xx
Hi Clara29 It’s a long shot as this is such an old thread but I was wondering if your symptoms subsided in the end? I have recently been diagnosed with MS and I have l’hermittes that has turned into a constant tingling in one leg. It seems to be getting worse and worse each day and is very frustrating… Thanks for any replies Cathy
its a long shot as this thread is so old now but I wondered if your symptoms had improved in the end?
I have recently been diagnosed with Ms due to l’hermittes and optic neuritis.
However after some months after the “‘hermittes started it has now turned into a constant tingling and heaviness in my leg.
I wondered if there is any chance it might improve?
Hi there . Hope all is well … I have a few questions I have experienced numbness, tingling , and heat on both legs went to the ER a month ago and was referred to a neurologist… who then sent me for 5 days of infusion with steroid … which help a lot since I wasn’t really able to walk felt like I was walking and hot pebbles … I followed up with my neurologist 4 days ago does see I am doing much better but wants me to get an mri done again this month … she hasn’t said i have ms yet but is calling it transverse myelitis … I also heard her say “CIS” which I have no idea what it is … never had any prior symptoms this was my first time went from numbing over the weekend and then the tingling and burning started … I’m sorry I’m just sooooo confused
I forgot to mention , we did an mri … she says I have 5 brain lesions which are not active… and Lp came back negative
Hello can someone help me please, I was diagnosed 4 weeks ago am awaiting medications. I think I have experienced a relapse on Saturday where I woke up with extreme tingling in my legs and tummy. My foot feels as though I am walking with a ball attached to the bottom! Has any experienced this? I’m so scared that this is a development and not relapse. Any advice would be appreciated! Thank you
hi justine you need to wait for the medications, which i assume are one of the disease modifying treatments. let your neuro know about the new symptoms as this may affect the treatment that you are given. the number of relapses you have had can impact on whether you get a DMT. don’t worry about it being a “development”. as you get used to having this wonderful (??) disease, you’ll notice small differences in your symptoms occur quite often. please don’t be scared or upset. yes, i’ve experienced the heavy legs. mine feel like oak tree trunks! be gentle with yourself xx
Hi, I’m having similar symptoms - my legs from the knees down feels like I’m wearing surgical stockings, the heel of both feet feel like I’ve satsumas attached to them!!
My humour aside I’m really scared.
I also have numbness in my fore fingers and back of left hand (I’m right handed) nerve pain radiates into elbow
odd irregular shooting pains up legs, into groin or down back of legs, mostly left side as left leg is more desensitised… but painful - if I tread on s cat biscuit it feels like a Lego brick. I can’t wear trainers as I feel every little stone as if I’m bare footed (glad I love my doc martens)
Me memory is shocking and I loose track of conversations, forget words for things or swop them round mid sentence.
The onset on a urgent need to pee and having small accidents red flagged my trip to hospital where I had a mri scan, I was sent home with discharge letter saying “? Demyelinating process in base of cervical spinal cord” and neurology outpatient follow up required.
I saw the neurologist Wednesday and she didn’t know why I was there - did brief tests and asked lots of questions. (I must of failed miserably on the coordination test as I kept touching her finger and missing out my nose with my left hand)
she was looking at thoracic (mid back) mri so couldn’t see any demyelination (even tho I said neck)
She requested brain scan, nerve function tests and more blood tests
am I on route to MS diagnosis???
It’s impossible to tell. Some neurologists are completely inscrutable, you just can’t tell what they’re thinking.
Others are a bit more human and talk to you about what they suspect and why they’re arranging those specific tests.
If you’ve only had your spine MRI’d, then I would imagine there is no point guessing at an MS diagnosis until you get the results of the brain. And blood tests aren’t usually required if the neuro thinks it is MS, they’d be more to rule out other things rather than to confirm or deny MS.
To be totally honest, I don’t think you can even guess at what the neurologist will be diagnosing at this point. I know it’s bloody hard (impossible?) but without the full information, the neurologist won’t give you an answer, so it’s a bit of a waiting game.
Thanks Sue for replying!
The blood tests she’s running are for lupus, autoimmune disorders and inflammatory. I had full bloods done at the doctors a month ago which came back all normal.
I don’t have other symptoms of lupus apart from nerve problems and aches
i know it’s all a waiting game but it’s scary and I want answers so I can know what I’m dealing with and can get on with my life.