New to Wegener's - lost feeling in parts of my body

Allergies, blood and immune system
1

After a month of running to doctor and emergency room rashes on my face, nasal crusting and congestion, feet and hands falling asleep, eye sensitivity to light), I was diagnosed with Wegener's in early June. I have lost feeling in 6 of my fingers (thumb, index and big finger on each hand, the back of my left leg and bottom of my left foot and bottom top of my right foot). These conditions have been going on since May

I am on Prednisone and Gabapentin and the tingling is worse in the afternoon. My left foot feels bigger in the afternoon than in the morning and I walk with my left foot dragging.

Has anyone else experienced this tingling? How long does it last? The simple things I used to do now take three times as long and I keep dropping things because I cannot feel that they are in my hands.

I know things could be worse, but I have a hard time keeping my spirits up sometimes.

 

2

Hello Nancy

Sorry to hear your story. I got diagnosed with Wegeners 20 years ago, and the only symptoms that we share are crusty nose and rashes. My main symptoms were joint pains and mouth ulcers. Are you seeing a good Rheumatologist? Which country are you in?

3

I am seeing a Pulmonologist and a nerve doctor right now. I was also given 4 infusions of Ritoxoin In June. I did start out by having the roof of my mouth hurt and then the right side of my mouth. The dentist found nothing wrong, but this was the start of it.

I am in the United States.

4

Hi There Nancy,

I had Retixumab (Ritoxoin) infusions - series of 6, first two were good but the others didn't help. Google Dr Peter Merkel - he is the world's leading expert on Vasculitis/Wegeners and is US based at the University of Pennsylvania.

Take care,

Dave

5

Exercise and eat healthy.