couple of questions

[ndngi]

As I am new here, I apologize for all of the questions up front. Last night I experienced severe itching on my legs arms and chest. There isn't a rash so to speak but I have little red, blood blister type dots all over the same areas of itching. Also, I am having a pressure and burning feeling in my eyes. They kind of feel like when you have a fever. Is this from WG?

[Dirty Don]

Is this from WG?

First of all, no need ever to apologize! And, yes, you are experiencing a flare. What you're experiencing is pretty typical. You need to have your blood/numbers checked immediately so doc can determine a drug dosage/change. Get thee to your doc!

[ndngi]

Thank you Don. I am still waiting to get a referral from my family dr. I feel like I keep bothering him with new stuff. He is almost making me feel as though l am putting him out and he is starting to look at me as though I'm making this stuff up. When he walks in he immediately says, "what else is going wrong with you"

[Dirty Don]

Then I would suggest you get an appt with a rheumatologist nearest you...bypass Mr I Can't Be Bothered...if your insurance allows. At least get another opinion from another PCP. Your symptoms are very WGs (the 'rash' is purpura, and the eyes may be ocuitis), and as such they warrant immediate attention. Some docs have huge egos and since they know little or nothing about WG (the one I initially went to thought I had lung issues, gave me a Z pak, sent me home...I ended up in the hospital a week later nearly dead. He later said he had read about WG in med school...duh. Fortunately he wasn't my regular PCP or I would have...well...), they tend to think what a patient knows or feels is worthless info and they are the ones who can only make appropriate dxes. Please don't wait...not being alarmist here...just have seen & heard it over and over on here.

[annekat]

Thank you Don. I am still waiting to get a referral from my family dr. I feel like I keep bothering him with new stuff. He is almost making me feel as though l am putting him out and he is starting to look at me as though I'm making this stuff up. When he walks in he immediately says, "what else is going wrong with you" Shame on him!

[Barbara N]

I hate it when the doctors or people around you think that you are a hypochondriac, it is hard because one day you may have one set of symptoms on another day they are completely different form the day before. If your Dr. doesn't know about WG then you should try and find one that does.. You can lose vision so fast it is important to get it checked.

[Alysia]

Hi,
I agree with Don. go and see a good doc asap.
welcome to forum. you can ask as much as you need.

[ndngi]

Thanks again everyone. I am not having very good luck finding a doc that is taking new patients or has an opening before August....ugh, I'm getting frustrated!

[Dirty Don]

Another option is to make that earliest available appt, then keep calling as people will cancel thus opening a spot. That's how I got into Mayo so quickly: wife or I called every day...was bumped up from 3 month wait to 2 weeks in a short time...keep at it.

[ndngi]

Don...thank you so much for the advice. I will keep on keeping on until I get in!:thumbsup:

[annekat]

It seems inexcusable that a person who may have Wegs cannot get an appointment for 3 or 4 months. I guess I am lucky, here, it doesn't seem that hard to get a quick appointment when one has an urgent issue (such as a weird rash.... the purpura?). Of course, I already had established relationships with an ENT and a pulmy. I guess that helps. When my lungs got bad and the pulmy admitted me to the hospital overnight for tests, that's when the word Wegener's came up. Then I got a quick biopsy from my ENT, was dx'ed and began treatment by the pulmy. Even if you are ultimately hoping for an excellent rheumy or true WG specialist, it's important to get in with somebody so treatment can begin. Seems like your family doc is being negligent, or is just ignorant.... he himself could probably get you in for a biopsy or otherwise speed up your process if he believed you might have Wegs. I think the tactics suggested by people above are good ones, but if things get really bad, go to the ER and someone will pay attention to you, I hope!