Recently diagnosed brother has lost feeling below his knees

[jeniban]

I too got peripherial neuropathy in both feet. It started on top of my Rt foot then progessed within 2 weeks to both feet and legs. Then i developed foot drop in my Rt foot and weakness ++++ in both legs. Thank fully most has resolved with a some pins and needles in both feet. This took about 18 months. 12 mths on oral CTX and now Imuran. i also found than oral CTX made my feet painfully cold for about 6 hrs after each dose. There is hope for a full recovery

[renidrag]

Dale, did you have complete numbness from the knees down? That is the key.

I would say no. But there were times I felt I was walking from memory.
Dale

[georgewhdoors]

Hi - thanks everyone for your responses. My brother lives in Wolverhampton. It is truly uplifting to find a group of people so willing to help and share their knowledge. I have passed your responses on to my brother so hopefully they will help

[Hammy8241]

Hi - thanks everyone for your responses. My brother lives in Wolverhampton. It is truly uplifting to find a group of people so willing to help and share their knowledge. I have passed your responses on to my brother so hopefully they will help

I think thats is Jacks area. I'm sure he will point you in the right direction for WG specialist help.

[Tippon]

Hi George, welcome to the forum

I've had some loss of feeling in my hands, and also some pain in my legs since I was diagnosed at Xmas. I lost all feeling in the back of both hands, and most of the feeling in the little finger of my right hand, along with some feeling in the little finger and ring finger of my left hand. My doctors think that it may have been due to the number of venthlons (needles) that were put into my hands while I was in intensive care, rather than due to the Wegener's, but most of the feeling has now come back. My right little finger was the most affected, and the feeling is slowly coming back there too. Hopefully, if it was down to the Wegener's, this is a good sign

The pain in my legs has been caused by a build up of fluid, which has also caused my legs to swell up. If your brother has fluid build up, it could possibly be putting pressure on the nerves, like when you sit on a hard surface and your leg goes to sleep. It might be worth getting his doctor to check that, even though it's a long shot. I was put on Frusomide, a water tablet, which helps me to pass water and get rid of the excess fluid. Only downside is, I now pee like a racehorse, at least once an hour!

I know it's hard, but tell your brother to try not to worry. Getting stressed out and upset is only going to make him feel worse. If he's able to, tell him to go for short walks. It will get the blood flowing in his legs, and may help to relieve them. It will also help to take his mind off things for a while

Have a look at the link in my signature. I've built a website to complement this one, but based in the UK. It's a work in progress, but the idea is to give us localised info

Hope this has been some help