Neuropathy.

[Binko]

I suffer from numbness in my feet and hands but last week I had the same problem on the right side of my face and my sight was affected. it lasted for a few hours. This has worried me. Does anyone else have this?

[Dbis22]

I have had numbness in my ankles / feet. Not extreme and certainly liveable with. Over time I have learnt that most of these things can be attributed to drug s rather than Wegener's itself. Neurologist wasn't terribly concerned.

[Binko in reply to Dbis22]

Thanks for your reply. I think you could be right. I am seeing my Specialist next Friday so I will run it past him.

[Hidden]

I had this and it was attributed (I believe correctly) to a combination of steroids and nerve damage due to the WPA/WG.

[Binko in reply to Hidden]

Thanks for your nput. It will be interesting to get my Specialist's take on it.

[Dbis22]

Martin .... please enlighten me. My specialist sometimes refers to WPA but other times it's Vasculitis with Polyangiitis. What is WPA short for and is it a current term??

Thanks!

[Hidden]

There's been a move by the authorities to get rid of diseases with associations to 'names'. In the case of Wegener's there's been some dissent for some time because of his nazi party membership although there's no solid evidence of historical wrong doing.

The (new) official term for Wegener's Granulomatosis is GPA = Granulomatosis with Polyangiitis.

My apologies for the typo above!

[Hidden]

I am about to go through a nerve conduction test, to check for this.As I am very weak,muscle wise,and tingling hands and feet. I have trouble lifting legs and feet,and when examined my resistance was next to nothing.I also have titubation too.Alot of this started before i started any drugs. But the pred and cyclo may not have helped.So we will see what the test shows. But one doc says pred and it will get better, some say wg and it wont.So i have no clue! lol

[Binko in reply to Hidden]

I am having a nerve conduction test next month so it will be interesting to see what the result will be and what your result shows. Watch this space!

[Hidden in reply to Binko]

HI Binko,have you had your test yet? Mine is monday

[Binko in reply to Hidden]

Hi, I have my test on 15th of Oct so I will post anything I learn.

[Hidden]

Hi,had my test yesterday,and there was no sign of nerve disease.Was an "experience" Didn't hurt as such,its just like when you touch someone and get an electric shock.He was thinking it may have more to do with m ylung damage,lack of oxygen that type of thing.

What did hurt was the muscle test,where they stick needles in you,and put pulses through.Then i had to try and push against hi,That ached for a few hours after.And it showed i have myositis,muscle inflammation. Oh the joys

Good luck for yours

[Binko in reply to Hidden]

Thanks for the info - I think!! Now I am really looking forward to Saturday !!!! LOL I will post up what happened. I am looking forward to the talk at the RD&E tomorrow about how Vasculitis affects the kidneys. I will post up about that too.Take care.

[patchey2 in reply to Binko]

What did they say about your test?

[Hidden]

Sorry i didnt mean to do that, it is bearable honestly, the doc was so lovely, i didnt feel the needle at all,and the shocks just felt weird thats all,and it was quite funny seeing my toes and thumbs bobbing abou ton there own lol

.I am sorry i hate when people do that to me.

Yes would love to know how you get on,

You too !

[Hidden]

Hi binko, how dd it go?

[Sfserano]

I also have numbness sometimes in my face slightly, but I feel it more in my eye. Most of all my pain-numbness-tingling is on the right side of my body. However my ribs & chest are also feeling it.