Couple Questions - Another one for Jack :)

[Brooke]

I remember after my first sinus surgery that the anesthesiologist or whomever had to intubate me - had to use a smaller device because they could not get the tube in. That was before being diagnosed.
Jan - I will have to make an appt with my ENT or actually I will be seeing ENT when I go back to Mayo at the end of the month so I will have them check it out. I will also be getting another bronchoscopy so they will see then too.
I don't think it is harder to breathe laying down, I will have to see tonight when I go to bed!

[JanW]

If you're getting another broncho they will definitely check it all out. I just know how insidious this disease is, so now I am becoming the SS nag! (I will leave Sangye the title of WG specialist nag, along with a few others). All along I've been compensating (easy to see in retrospect, but while it's happening you're just living your life)...I still wouldn't have been to a doc about any of the WG symptoms even the shortness of breath. It just wasn't that bad to me but the doc was pretty horrified at the level of "disability" in terms of breathing that I have been living under. Yet this isn't uncommon in his practice at all.

[Sangye]

I am becoming the SS nag! (I will leave Sangye the title of WG specialist nag, along with a few others).

Yes, we should all specialize in our nagging.... LOL

It does help to have direct experience. Jan you really know what it's been like not having an SS specialist. I and others have learned about the importance of having a Wegs doc in general.

[JudyJ]

I hope it is OK to respond here and ask a question as well. I did not know colon involvement was unusual. When I first go sick in 1995 I had colon involvement as well as the whole digestive tract. Mouth on through. The first couple of weeks in the hospitol all I had was cream of wheat and split pea soup when I could even handle that. Water was even painful. To this day I can barely stand cream of wheat or split pea soup. After several months I was able to eat normal again. The main attacks were to my kidney. I do have a question though. This throat sinus stuff is sort of new to me. I see my Rhematologist this week so I will hopefully get some answers then. This time when I got sick I had terrible pain on the left side of my face. I saw an ent dr only twice. He does not know much if anything about wegeners but felt as long as I was being treated for the disease that I should be OK. Well about 2 weeks ago I started having a numbness in my throat and tongue on the left side, almost always odd sensations and/or ringing in my left ear. I called my md and he said to wait to see what the Rheumy had to say and if needed he would refer me to an ent again. So does this sound like anything any of you have gone through. I am pretty ignorant on this stuff. I am more familiar with the lung and kidney thing even at that It has been along time since I was sick.

[Jack]

Hi Judy,
Although not exactly as you describe your symptoms, a lot of people on here have ear involvement associated with eustation tube trouble. This can affect you from your ear, right down to your throat so my guess would be that you are experiencing more Wegener's symptoms. Unfortunately there does not seem to be any easy cure for this one.

[elephant]

Hi Judy, welcome! Don't mean to come on strong but do you see a Wegeners specialist? With numbness to the throat, you might want to see a Neurologist and get a MRI of the brain. It's very rare but I have read/heard that you can get granulomas in the brain. I too have sinus/lung/ear/eye and other involvement secondary to WG. I never had numbness to the throat. Hope you get your answers soon.

[JanW]

I agree with elephant that you need to see a specialist. At least start with the ent since it seems to involve the throat. A rheumy really isn't going to be qualified to go in depth into problems in that area.

[Sangye]

Judy, your rheumy this week should order an MRI of the brain and upper cervical region. Numbness on one side of the tongue and throat suggests cranial nerve involvement (nerves that originate in the brainstem). Wegs in the central nervous system is rare but not unheard of. Probably about as rare as Wegs in the colon. (Though I've never heard of anyone with the entire GI tract affected as it was for you.)

When you see your rheumy, please bring his attention to the numbness. That is NOT a typical Wegs symptom in that area. If it is CNS Wegs, it can become life-threatening quickly.

Have you noticed slurred speech, biting your tongue, difficulty chewing or swallowing? Any weakness in your face, neck, shoulders? These are questions your doc should ask also.

[JudyJ]

Thanx so much for all your input. I almost feel new at this. Ok third time is a charm. I have tried to answer this twice now and my soon to be one year old granddaughter has decided to help out so I will try to before she can help again.
Sangye. I know then and now I have colon involvment ,but thinking back 15 years may as well be 100.......... I remember testing positive for some virus that attacks an abnormal immune system. Can't remember what it is now. That could have something to do with the mouth and stomache so I could have been wrong there. I don't really remember now. Guess I should check that out. I do remember my very first diagnosis was chicken pox. Went down hill from there. I seem to be aware of the numbness on my tongue and throat some times more than others. Today does not seem to be as bad. A little on my tongue and cheek. Other times I feel like I am tripping over my tongue but it is never totally numb. Today I actually feel pretty good. Oh yes I have plans to have quite a chat with the Dr. don't know if I am ready to wrap my brain around any involvement there.
elephant Good question! I love my rheumatologist but I don't know if he is truely a wegs specialist. When I found out it was not chicken pox. I was sent to Sacramento to Dr.Shapiro who specializes in life threatening diseases so I just assumed he was. I spent 2 weeks in the hospitol there having almost every part of me biopsied. I know he consults with other Rheumatologists I think he has even mentioned names but I guess I did not pay much attention. My rheumatologist, primary and pulminary are the only drs. I see regularely right now. Next week i have a pulminar function test and another ct but the Dr. seems to pretty positive they should be good.
I am not an agressive person but I will really try to keep on top of all this.

[elephant]

Judy, I know having WG is so overwhelming that you want to eat a dozen crispy creme doughnuts and call it a day. Judy you will get there in the aggressive department. I saw my new primary doctor today and I like him. He was on top of stuff and I didn't have to say," did you order this and blah, blah...I was like Yahoo, got a doctor who is very good!