Muscles Painful

[Derek]

Thanks Sangye glad you are back I have missed your sense of humour.

What was the outcome of the whistling lung complaint and how has it effected you.

I saw on the internet that you can get pain in your teeth if you have a flare. Funnily enough I also have had a pain which came with my other pains but I never associated that it might be linked as the tooth that hurt was supposed to have a root canal done on it, but I have been putting it off basically because I am a dental coward and assumed that what the pain was. Have you ever heard of teeth pains and WG.

One last thing the last time I went to the dentist the doctor said, I had to have a 5 day antibiotic screen and have the work done on the 3rd day. Has anyone heard of this is it still relevent.

It is good to have a place to ask these questions as it saves you the embarrassment of the doctors looking at you as if you are an alien. Perhaps we are but do not know it yet.

Derek

[Sangye]

The whistling lung thing seems to have eased up as my lungs have cleared up. (They were pretty crackly with old blood and inflammation) I barely hear it now.

I definitely have had tooth pain with Wegs, way back before I got dx'ed and had crippling joint pain for months. Every so often--always at night-- it would suddenly feel like one of my teeth was going to explode. Not just ache, but actually like it was exploding. (I had similar pain in my joints) The gums always looked healthy, and it would come and go in different teeth, so I knew it wasn't a dental problem. It'd disappear by the morning. Thankfully, it only happened a handful of times.

I think the jury is still out on the need for antibiotics/dentist thing. I guess it would depend on how you are otherwise--is Wegs active, are you catching every bug out there, how well do you tolerate antibiotics, etc.... Bottom line : I dunno. How's that for helpful??

[Jack]

I used to have tooth pain associated with my sinus trouble flaring up. The nerves run in the same area. I always found this a bit odd because my sinus linings were removed along with the nerves to my top teeth before they diagnosed that Wegener's was the true cause. I still have tooth pain occasionaly, but I think it is due to their general, fairly poor condition.
I visit the dentist on a regular basis and have asked several about special precautions, but none seem to think this is necessary. That could of course be down to their ignorance of the disease!

[Sangye]

They removed your sinus linings???!!!!

[Jack]

Yes. After a number of wash outs, it was decided that the only way to fight the "infection" was to remove them. The operation is called a bi-lateral Caldwell Luk and is seldome performed these days. I won't go into details, but when other patients had visitors, they used to talk about me behind their hands. I looked quite a mess!

And of course, it was all for nothing anyway.

[Sangye]

Sheesh, Jack. The more I learn about what you've gone through all these years, the more I'm amazed that you're still alive. Thankfully, none of those procedures removed your sense of humor.

[Doug]

Me, too, Jack. I felt nausea when I read about the sinus lining business. I still feel a bit woozie, for you. Gad, Sir, have the doctors left you any parts!?

[Jack]

The best bit of me is my kidney and that used to belong to someone else!

(Thank you, whoever you were. )


As I've posted before, take each day as it comes and think of what you have rather than what you've lost. While in hospital, I've seen a couple of people give up and they just died! The scary thing is that although I don't feel like doing this myself, I can now understand how they got there.

[Doug]

"The scary thing is that although I don't feel like doing this myself, I can now understand how they got there."

Me, too, Jack. When I've expressed this sentiment to non-Weggies (or people who've never experienced any illness serious enough to threaten life.), the response was alarm. Fact is, when you kiss death on the mouth, you know how it feels, but are happy to have survived it alive. It isn't morbid to feel that way, I think, just recognition of empathy for others who had an alternative ending to circumstances you survived. Whew! And God (or whoever!) bless the people who donate organs for others to live.

[Sangye]

I agree-- I think our will to live is much more fragile than we like to think. It terrifies others when we mention that, because it's their own fear of "I might feel the same" staring them right in the face.