A question for those of you with nerve involvement

I have peripheral nerve involvement with my vasculitis and since treatment the numbness/ tingling is so much better. But something is really worrying me and I wondered if anyone has had something similar, I have lots of twitches and jolt like feelings in my body which don't particularly bother me and were explained as an indication of damage to the nervous system but I am getting a very similar feeling in the centre of my chest which feels like a massive heart beat and after that my heart rate seems irregular and then settles down after a while. It is almost always when I lie on my back and if I turn to my right side it stops but not my left.

I have had a 24 and then 7 day tape and have been told its nothing to worry about and only ectopic beats. I find the don't worry bit hard as when it happens it feels like my whole body jolts it is so strong and only happens when I get the other jolting feeling in my arms and legs. I have always suffered with tachycardia with no reason found and wondered if anyone else has had a similar thing?

Thank you


4 Replies

  • Perhaps it might be something related to the medication or prednisolone?

    I've got nerve involvment in all 4 limbs, and a new patch of numbness at the back of my nech, but I've never had a Tinel's sign outside of the peripheral nerves. Do you see a neurologist as well as a rheumatologist?

  • Thanks for replying.

    Yes I do see a neurologist and he wasn't sure what it was and my rheumatologist said that he thinks its anxiety but I don't agree as its doesn't happen when I feel anxious, I think its one of those things that they just don't know the answer to. I have had it on and off for about 2 years so I try to reassure myself that nothing awful has happened yet!

    You may well be right it may be prednisolone, who knows when we take these strong drugs what the effects will be.



  • Hi Jenny I to have nerve involvement I am very new to this but I have had a lot of rituxamab and one thing I have noticed over a short period of time is the sudden body jolts especially in my arms any views?

  • Hi there

    Yes I seem to be having body jolts lots at the moment more in my arms too but sometimes in my legs aswell, they make my limbs actually jump and I apparently kick out in my sleep through them. Not sure if it is all part of the illness or a side effect of the treatment,


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