Vasculitis UK
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numbness in arms ,legs and feet

been having this for 2 years,ive had nerve conduction studies done ,and they were fine

but having them done again soon

fed up being told its the way I sleep,when it obviously isn't

has anyone been told what the cause of this is,and also had any treatment

thanks

11 Replies
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No sorry just pins and needles in my legs

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thanks anyway

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Hi, i have been having problems similar to yours almost since i was diagnosedwith Cerebral Vasculitis (PCNSV) around2years ago. I felt like no one believed me and no one seemed

to know what caused it. I have done a bit of my own research and found that it

could be my brain sending the wrong signals to the affected parts.

Similar to what happens when youve had a stroke.

I can have these numb, painful, burning sensations in one place for

weeks or months in the same place, they also can crop up overnight.

I havent found a "cure" for them yet but keeping the "sore spots"

Warm helps and of course painkillers.

What type of vasculitis do you have?

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I have similar but haven't found any answers.

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I have heard that u can get numbness in feet legs and hand due to vasulitus a diabetic in witch my sister as got numbness in feet due to diabetic I have the same due to vasulitus and the other wk a gentleman was talking to myself and sister and as numbness in hands and feet is was due to having chemo

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Hi Keith

I am still struggling to find an answer after 3 years and there doesn't seem to be one. I have now decided I will just have to accept that this is probably as good as it gets. I find exercise helps but then I get cramp in my feet. Hey not to worry, at least I can walk now so it isn't all bad.

Good luck

Lynne

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Hi, sounds slightly different to the peripheral neuropathy that accompanies a lot of vasculitis suffers. worth a google anyway. I am taking Amitriptyline at night, initially made me very sleepy the next day but that does improve. I also have an electric blanket at the bottom of my bed (single laid full length along the bottom), I find the heat helps me to ease the uncomfortable feeling in both my feet. Pam

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Hi i have MPA and numbness in my legs and feet. I told my GP this 4 years ago but she ignored it!!!! After diagnosis just under 4 years ago My Consultant informed me it was the nerve endings in my legs that had narrowed. I am now going for tests on the 12th of June as I feel as though my legs and feet are wrapped in cling film. Its weird and now its difficult getting footwear thats comfortable. alking is difficult for any time, considering a mobility scooter, Its hard coming to terms with this illness, once over I was never still never stopped from morning till night ran circles round my daughter nit it takes me all my time to get out of bed. GPS know little really and seem loathe to learne about the illnes. its down to us.

Patsy

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Hi Quinster

Yes I get this but I have thankfully almost lost my symptoms due to a mixture of prednisolone, mycophenolate and hydroxichloroquine. In my case I have had cerebral vasculitis ruled out and have been told that it is as a result of the nerves in my peripheral nervous system not getting enough blood supply due to the inflamed blood vessels. I am lucky enough to see Professor D'Cruz at St Thomas's and so don't doubt his diagnosis. I always found it was worse at night and sometimes still find it affects whichever side I lie on more. I am presently on 7mg of pred and find that is the lowest I can go before the numbness returns.

I had nerve conduction studies which were inconclusive but I was told the nerves affected are often beyond the resolution of the test..

I hope you get some help soon as I know how horrible and restricting it is.

Jenny

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thanks jenny

that's a good insight,mine is also mostly at night

my leg was that numb the other week ,I thought I had had a stroke

I agree with what you say about the nerve conduction study also

seem to be very hard to get to the bottom of

thanks

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I thought that the numbness, pins and needles, raynauds and cramp were all part of my TAK/GCA? Initially the arteries in my arms and shoulders were almost completely blocked, so that seemed to make sense. Eighteen months ago I was being woken 3, 4, or 5 times a night by the pain, and had to hang over the edge of my bed and shake my arms to get some feeling back. Now, with treatment, it's only once a night! And I can go for a short walk without my feet cramping up. You are right though about GP's; they really have no experience of this. Mine had been making soothing, and ultimately useless noises, for at least 2/3 years before I ended in hospital! So I think you have to continue telling everyone about it until they take notice.....

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