Nerve needle prick sensations

[RareStap]

Recovering from peripheral nerve damage caused by CCS and am experiencing many many little pin pricks all over my body, just discomfort really but would like to think this is nerves 'waking up' - has anyone experienced this, would be fascinated to know, and to know what it really means! Many thanks, Sandra

[LynneJ Vasculitis UK Volunteer]

I had this for a while and then things improved so I also think it was the nerves getting back into gear.

[RareStap in reply to LynneJ]

Thank you, that makes me feel less of a freak! S

[TigerEyes]

I have had these pin pricks all over my body since I was diagnosed. My hands are the worse as they are very sharp pins and needles and it makes doing anything very difficult. I am currently taking azathioprine 100mg twice a day and currently on 25mg prednisolone on a reducing dose. I saw my rheumy yesterday and he now says he is not sure whether it is CCS or some other form of vasculitis. I just wondered if anybody had any advice what I can do to find out about getting a diagnosis. He says there is no test to find out whether it is CCS and I fit some of the puzzle but not all of the pieces he said, so I know feel very disheartened about what to do know.

[Derek]

I have had CCS for 6 years and experienced similar symptoms in the early stages of recovery. Not all nerve ends have recovered, as a result strength in my hands and limbs is impaired. I have continual pins/needles feeling in my hands and feet with the occasional sharp pinpoint pain in my legs/feet. My consultant advised that nerve ends can take up to 2 years or more to reach their extent of recovery. Also, most of my muscles have partial numbness, which I believe is due to nerve ends not fully recovering and are now unlikely to do so. Despite the limitations I try to exercise as often as possible, either walking or an exercise routine at home. I think this is most important in reactivating nerve ends and a positive way to fight the disease.

Tigereyes, my diagnosis was directly as a result of blood tests and identified by my rheumy consultant who is familiar with CSS. If he hadn't been in the hospital on the day I was admitted it is most likely that I would have been misdiagnosed. It is important to see the right health professional which, unfortunately, can depend on where you live.

Derek

[TigerEyes in reply to Derek]

Hi Derek thanks for the reply I live in the west midlands I don't know whether that is close to u or if u know of a consultant I could get referred to.

[sarahxxxx]

I've got MPA and live in Birmingham. Queen Elizabeth Hospital in Birmingham is a specialist vasculitis centre. I get seen every two weeks at the research clinic and can't recommend them highly enough. All of the nurses and consultants have been wonderful. If you can I would recommend you get referred there. I get the same symptoms and they are sending me for nerve tests etc but my kidneys are the main organ affected.

[TigerEyes in reply to sarahxxxx]

Hi Sarah

Thank you very much that is very helpful I live in Kingswinford so will get my GP to refer me do u have a consultants name?

[sarahxxxx]

Mine is Dr Matt Morgan in Prof Harper's team but I'm not sure if they only deal with renal. Dr Peter Hewins is probably the guy you need to be referred to - I was diagnosed by him. They are all leaders in the field and have been brilliant. Good luck x

[TigerEyes in reply to sarahxxxx]

Thank you Sarah very much I will let you know how I get on.