Quote Originally Posted by jhollo9 View Post
Hi,
I too am writing for my boyfriend of a few years now who has been in the hospital for the last 2-1/2 weeks. He has been diagnosed with Wegener's because they found spots on his lungs on a CT scan, but is very confusing to us. His symptoms started out with his feet and fingers going numb and becoming very painful. Has anyone had this happen to them? The docs do say that it is not a common symptom of WG which is confusing to them too. We just don't know where to turn. We are in an Everett Hospital and would like to see someone in Seattle or elsewhere if we have to but he cannot even sit upright for more than an hour due to the pain. His toes on the right side are black (the last 3) and his fingers on his right side are blue. It has gotten a bit better but will not go away. He is on prednisone and cytoxan.

Any help or comments would be greatly appreciated. Any doctors in this area I could possibly call that anyone knows of would be of great help also. We are so afraid of him losing his toes.

Thank you,

jhollo9

Before diagnosis, I had been to the ER twice with joint pain and numbness. Now that I've been diagnosed, I've learned that traveling rheumatoid-like issues are a common occurrence with Wegeners. One day, it was my knee, one day my ankle, another day, both hands, another day, my jaw and face, another day the other knee, etc., etc.,etc.

I just found out that I have peripheral neuropathy in my feet and legs. Another wonderful side effect of possibly: Levaquin, Cytoxin and/or Avalox--all drugs we take for handling the symptoms of this wonderful disease!

So, I must say that I am sorry, but I am not surprised that he has pain and numbness in his extremities.