Hoping for reassurance!

Really hoping for some reassurance please!

I posted earlier in the week about increasing numbness/altered sensation spreading from my toes up my legs and also into my hands/arms. I spoke to the rheumatology team and after much discussion they said to go to A&E 'if you're really worried'. I was worried as its developed so quickly. Went to A&E and they've done blood tests (normal) and checked if I can feel them touching my legs, which I could (I can feel them touching my skin but it doesn't feel normal sensation, if you know what I mean, like it's partially numb). They said basically it's relatively common in CTD and to see my rheum next week for her advice again.

I'd like to know if others have this? Is it one of those annoying things that is irritating but I shouldn't panic about it? Is it treatable?

Grateful for any reassurance please!


Lucy X

9 Replies

oldest • newest
  • Hi Lucy,

    I have had this kind of thing a few times and I think you will find others here have too.

    Strangely it often hits a this time of the year when very early autumn is approaching , at least in Scotland where I am! It usually appears with a flare of everything else.

    Last year both feet and legs up to knees had severe burning and tingling and the top of one foot went completely numb. It all happened almost over night. I was sent to a neurologist as I was investigated for MS in the past , so they rechecked but nothing was conclusive.I also get severeheat related muscle weakness which has always made them check for MS.

    It was all put down to a type of peripheral neuropathy due to the autoimmune condition, I still have no definitive diagnosis as bloods are normal but they think it is possibly in the Sjogrens , Lupus spectrum.

    It gradually receded over three months but the top of my foot took a full six months to become normal again. It still fells a little strange when you touch it, not like the other foot.

    I hope your problem resolves in time but I reckon it is most likely the Lupus. X

  • Hi Lucy

    Oven it had numbness to the extent you are describing but I know exactly what feeling you are on about. I've had a numb right toe for months, I can feel when I touch it but it doesn't feel right, like numbness/pins and needles its avert strange sensation. I get the same feeling in my upper legs sometimes it that passes within a few minutes. I don't worry about this as it's just my toe really and I did mention it to my specialist so I'm sure it'll be monitored.

    Unfortunately I think it's just another symptom that Lupus presents in one of its many forms. Like cuttysark suggests below if your tests are clear then I wouldn't worry too much just keep monitoring things :)

  • Hi luckyjc

    I too have had numbness in legs and arms at different times not together like you which can be very frightening when it first hits. Like Cuttysark has written I too went to a neurologist to have MS ruled out and now have diagnosis of peripheral neuropathy which can be treated with steroids. Your Rheumy next week should want to rule MS out and then should have the confidence to treat it!. Another possibility for leg numbness is inflammation of the facet joint in the spine. The numbness for this tends to vary and again treatment is aimed at keeping the inflammation at bay. I'm wondering what lupus treatment are you on as this may need to be adjusted or even changed?. Hope that's helpful, good luck for Rheumy appointment and keep us posted X

  • Hi Lucy, I've had numbness and pins and needles in my hands and arms recently and searched on this site under 'numbness'. There are a number of posts which come up and I found it very helpful to find many Lupus sufferers experience the same thing without it worsening or becoming something more sinister. Hope it helps.

    Best wishes Tinksy xx

  • Hi I started getting this in my feet this summer in Wales bearing in mind in Wales we don't get the same temperatures as thouse in the south of England, it started in my little toe this summer and I had just realised this morning it had reached all 4 of my toes on my right foot , my GP said to keep an eye on it and let rheumatologist know , I see my new rheumatologist on the 13 of next month , this one is an actually specialist in Lupus and sjorgrens not like my official one who is a specialist in limes desease , and hopefully won't send me home in tears !

    Good luck

    And gentle hugs

    Chris x

  • I have had the exact same thing going on for 2 weeks now. I'm calling rheumatologist first thing monday

  • Thanks everyone for all your advice and reassurance - has made me feel a lot calmer to know that lots of others are battling the same thing (though I'm sorry that you are). It seems to have stabilised since Thursday and not got any worse, which is a big relief. Think I need to remember that my rheumatologist may not have all the answers and I may need to add yet another specialist into the mix ie a neurologist - and I have that option if I need it. Thank god for this forum for giving practical advice! Thanks again everyone xx

  • Goodness, I've had lupus for twenty years and most of this time have had numbness in my feet and toes. I just guessed it was par for the course and have never even mentioned it to the doctors. You are making me think I should do something about it! But perhaps you could take some reassurance from my experience that it isn't necessarily too serious, though of course get all the advice you can.

  • Hi I have hypothyroidism and sjogrens. Had numb strange feelings in foot, months after having sciatica, so put it down to that. However symptoms worsened, left leg, left arm, and left side face, weakness and numbness. Very disconcerting.. I was taken to hospital on one occasion query stroke...

    I have recently been reassessed, to be given a management plan for sjogrens. I could have cried when told the numbness is neuropathy, associated with sjogrens. It is a genuine, and known, and accepted, symptom of sjogrens!

    The reason I could have cried? I was believed. It is real. It is known, accepted, and understood as part of the sjogrens experience. Other people have it. Now I know. I too accept it. Less worry for me!

    Good luck. Wishing for you, good knowledgable doctors.

You may also like...