Last reply 3 months ago
numbness/pins and needles

hi all!

Just wondering what your experiences with numbness and pins and needles was like, particularly at the start of your journey, especially interested to hear from those of you with PPMS.

Did it come and go or was it consistent from the onset (as in literally there all hours of the day, or did it come and go multiple times throughout a day)

Has it gradually got worse?

Did it come on randomly or was it triggered by leaning on a limb, or sitting for too long / in certain positions etc?

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lea_jeffreys
3 months ago

I had numbness and pins and needles in my left hand. This came and went over a couple of months. I saw my GP who thought it could be tunnel carpel. I didn’t follow this up. I then lost me sight in the left eye and saw a neurologist who diagnosed optic neuritis. It was after this and an MRI that I was diagnosed with relapsing-remitting MS. This was in 2009. I know this doesn’t answer your question but stay strong


stumbler
3 months ago

@georgiaolivia , this is a fairly usual MS symptom. It could represent the start of a relapse. Or, if it’s a further occurrence of an old symptom, could be an indication of some residual damage from an old relapse or previous activity.

In the latter case, it could we be an indication that we are doing something that our MS does not like. We should “listen to our body”.

More details of this symptom here:-

https://www.mstrust.org.uk/a-z/altered-sensations


sugarplump
3 months ago

I was diagnosed with PPMS last November but probably had it for about 8 years or so. My right leg has always been my main problem and i have foot drop…I also have constant pins and needles in my right foot and shin. It feels fuzzy all the time and has been constant for a few years now….drives me mad sometimes. Karen.


georgiaolivia
3 months ago

@lea-jeffreys when you say it came and went did it do this at random or did you notice it more when you were sat down / leant on something etc? and thank you, you too x


georgiaolivia
3 months ago

oops don’t think it tagged you
@lea_jeffreys


georgiaolivia
3 months ago

thank you @stumbler I also have a tremor that I’ve had along with the numbness and pins and needles for about 5 months so I don’t think it’s to do with me overdoing It, and It doesn’t seem serious enough to be classed as a relapse which is why I was particularly interested in peoples experiences with PPMS. I will definitely check out that link though thank you


georgiaolivia
3 months ago

@sugarplump thank you for your input! I feel you on the constant buzzing and I’ve only felt it for a matter of months so can definitely imagine how frustrating it must be after 8 years! I hope you’re holding up ok x


lea_jeffreys
3 months ago

The numbness/pins and needles used to wake me up in the night. This lasted for 15-30 minutes or so and went away. I have not had it since perhaps due to the DMD?


staceyelena
3 months ago

@georgiaolivia this is my main symptom and what set off the investigations – mine began with a pins and needles/tingling sensation in my right arm, kind of like I’d slept on it. Over a couple of days it began to spread with some areas becoming a bit numb to touch. Gradually it’s gone back to just being my hands, with a few areas of my face still a little numb to the touch. If I get tired or run down it spreads again. I’ve tried various tablets to help but nothing really helps at the moment. This began in April and I’ve just been diagnosed a few weeks ago. I’m really hoping it hours away, but The consultant suspects it’s damage from the 2 areas of demylaniation (however you spell it!) on my spinal cord. I find heat helps – I often sit with hand warmers or a heated blanket on my hands.


benna1985
3 months ago

Pins and needles were my main symptom until it turned into painful numbness. I can’t wear my wedding ring anymore as it feels like my finger is on fire when I put it on.

I have dealt with this for almost 10 years. I am able to push through 99% of the time but there are always moments of tears!


rivka
3 months ago

Pins, needles, painful numbness, yep, I have them all too, @benna1985. I also have the occasional breakdown in tears from constantly pushing it away. Really, really, frustrating and wearing. 😒

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