Couple Questions - Another one for Jack :)

[Sangye]

Judy, you would know if your doc is a Wegs specialist. There are very few of them in the world and they know this disease inside out.

Though it can be overwhelming at times, you've definitely got to stay on top of this. Your life literally depends on you taking note of and conveying new or changing symptoms to your doctor. Wegs is unusual compared to many diseases (eg cancer) because symptoms are often more revealing than any of the diagnostic tests. So it's very important for you to organize yourself and stay on top of your case. With a diagnosis of multi-system Wegs you've got to hit the ground running.

[snooz23]

Judy,

I had quite a bit of numbing of the throat/tongue pre-dx. I have had all kinds of MRI's, CT scans of brain, sinus, head, lungs, etc. None of them showed anything neurally? wrong so not sure what it was. Have not experienced it since being dx. in Sept. and starting treatment. However, many previous symptoms did return and I am now switching medicines. My main presentation was severe hearing loss.

[JudyJ]

Snooz23, Thanks for your info. I was trying not to panic. I see the dr. sat. and will talk to him then. I was seriously thinking of taking and out of mind out, of body vacation and just vegg. HA!!!! There is that denial thing again.
JudyJ

[jola57]

Snooz23, I have been on cyclo and mtx now for over 3 years but just about a month ago I experienced just what you described - numb like feeling in the back of throat and tongue area. Strangest feeling ever. Tingly somewhat like just before the freezing peters out after a tooth job. Hearing, same one ear 35 the other 75% loss and tinitus now in both. So I guess yes to both for symptoms of Wegs.

[elephant]

I wonder what that is all about the numb feeling? Is it a side effect to the medicine? Is it active Wegeners? I will have to live with the tinnitus for the rest of my life. Nonstop ringing!

[pwc51]

At the onset of my Wegs I went very deaf - within a day of diagnosis and starting on high dose prednisolone my hearing miraculously returned. I had been deaf for several weeks and had tinnitius too! I still have an underlying sinus problem but it is negligible compared to the deafness!

[Jack]

There are quite a few posts on the forum now suggesting that increased pred will cure the tinitus and deafness, I've also found this to be the case. However, It's not really the long term answer is it?

[Sangye]

Jack, I'm not sure what you mean. Do you mean it's not the long-term solution because of the damage pred does systemically, or because the tinitus and deafness come back even with pred on board?

[Jack]

I mean that it is not a good idea to take high dose steroids indefinitely.

It seems to take more than just the usual maintenance dose to tackle the ear problems. I can cure mine with an increase to my Pred. but I've got enough side effect problems from the damn stuff already thank you.

[elephant]

I know what your saying, today I felt like I was under water talking. So I had to keep sniffing to get it cleared. So annoying!