I doubt that it's Wegs since I don't have any other Wegs symptoms. I have a few 100% accurate indicators and none are present at all. Hopefully it'll just go away, like many odd little symptoms do.
I doubt that it's Wegs since I don't have any other Wegs symptoms. I have a few 100% accurate indicators and none are present at all. Hopefully it'll just go away, like many odd little symptoms do.
It is probably not Wegs in the sense that it is indicating a flare, but if you are anything like me you probably have numerous abnormal symptoms even though the Wegs is apparently under control. I consider myself fully in remission, but I have foot pain, hearing problems / tinnitus and small things like this nerve (?) problem that come and go and may well be caused by Wegener's rather than drug side effects. Who knows? These might be signs of low level activity.
Yes...I think I was having low activity of Weg symptoms for 18 years. My low level of symptoms were...one finger joint would hurt and that would come and go. Chest pain on and off which I had checked out multiple times. Stomach pain on/off. Tingling on/off in my fingers. On/off runny nose and thought it was allergies. Low grade eye and ear pain on/off. Headaches on/off and thought it was migraines. Insomia on/off. When I could sneak a nap in I would and felt better after a nap. Broke out in several times that looked like bug bites...had about 5-7 doctors look at me and could not figure it out.
I agree that we can have very low-level Wegs activity even in remission. I have a number of symptoms that appear or increase at times--particularly if I'm under higher physical and/or emotional stress than normal. If it's bad, they stay for several days or longer. Usually they just appear for a day or two, until the stress is resolved.
Dr Seo alluded to this several months ago before I did the 2nd round of rtx. I was having some nasal activity on/off (nothing on the magnitude of what you guys experience). He said, "If you're left with some nasal symptoms but the Wegs is generally under control, I'm going to be okay with that." I think he understands that controlled Wegs can have this tiny amount of activity but never really pose a danger. Like maybe the Wegs dog's eyes flutter in his sleep?
Anyway, these things can scare the pants off us, because we're always on edge wondering "Is it? Is it....?"
I agree with you guys about the low level Wegs activity even in remission. My nose and sinus symptoms can come and go without warning and I always have the tinnitus which is damage from the Wegs.
Sangye, my friend who is also a neurologist explained to me that the tingling in my feet was due to nerve damage that either will heal or not. I know it is not the answer to your finger tips...
Maybe your fingers tips are tired...I mean you do hold the record for 4819 post to the Wegener's Forum...poor little fingers of yours are just...well....EXHAUSTED
CORRECTION 4,820 POST AND COUNTING.....fingers need love too Sangye
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