I am very confused I was diagnosed with vasculitis about 3 years ago after many tests and a nerve and muscle biopsy.

[Amanda51]

Since then I have been treated for vasculitis. Recently however I was confused as I had a really bad episode where my lower leg and foot went completely numb I saw a dr who sent me to hospital to get this checked I had bloods done and this was sent to my consultant who stated in a letter he is unsure whether I have vasculitis as a recent skin biopsy came back negative I don't know what to do now as I now have no diagnosis!!!!!!!!!!

[LynneJ Vasculitis UK Volunteer]

HI

Could it have been a flare? Has it improved again? You don't say what meds you are on. I don't think a skin biopsy would show nerve damage, would it? When my leg and feet went numb it was nerve inflamation caused by the vasculitis and I didn't have a skin biopsy. Perhaps someone else would know. We have a lot of people here with nerve damage so I am sure you will get a lot of answers.

Take care

Lynne

[Pollie]

I'm a bit confused as you don't say what other symptoms indicated your illness is Vasculitis? Are your leg and foot still numb..or was this temporary? With nerve problems, I was sent for 'electo' nerve tests, called EMG and NCV, which indicated how much nerve damage I have. I had a muscle biopsy 31 years ago which gave a diagnosis of PAN...but I'm bot sure which other forms of Vasculitis are diagnosed in this way??

I think you really need to speak to someone at the hospital...can you telephone to arrange an appt with the consultant again..and take someone, who knows you well, with you. Make sure you plan all your questions before you go. I do hope you have some success in sorting this out as you muyst be very worried.

[Amanda51]

Hi I had 2 EMGs which stated that my nerves were not responding as they should the second one was a few years after the first one and this showed that it was getting worse. My meds at the moment are 200 mg pregabalin, 120mg duloxatine and 15mg nifedipine. Thankfully my leg is not as numb as it was last week but feeling very painful. Thanks for the replies I will keep you informed.

[SusieMC]

I was originally diagnosed with Churg Strauss vaculitis and was treated as such. Some years on when I moved doctors he told me it certainly wasn't Churg Strauss. My diagnosis is now undifferentiated connective tissue disease yet many of my issues seem to point to a more vasculitic picture. I think like me there are a number of cross overs with the various connective tissue diseases but sometimes the blood tests cannot be definitive. I have learnt to live with that and the uncertain nature of my condition.

I suffer with periodic bouts of pins and needles and my rheumatologist is not sure she will find a definite reason for it but once again I go through the battery of blood tests, MRIs and trial and error with the drugs. I'm afraid I just take it as frustrating but par for the course. Good luck with your issues.

Sue