New with questions

[TammyE]

Hi,

I am new, and looking for answers:

This is my story, for about 5 years I have been sufferingfrom chronic sinusitis and multiple headaches; I have seen doctor afterdoctor. Then about 3 years ago I startedwheezing and couldn’t walk up stairs even talk without running out ofbreath. My migraines that had beendiagnosed years earlier (no reason for the headache they thought stress) becameworse. I was taking Excedrin up to 6times a day. I am seeing a Neurologist hegave me topamax it seems to work. I’m still having the wheezing, sinus problemsand now constant nose bleeds I thought maybe too many Excedrin. So my PCP sent me to an allergist. I wasn’t allergic to anything. Then she sent me for a CT of the sinus itshowed a lot of build up in the maxillary sinuses. She asked if I had any surgeries I said nobut the Techs from the Ct said I did. Somy allergist sent me to an ENT to see why they were saying this.

Now I am at the ENT he takes one look and says it wasbecause of the cartilage thinning or something I really don’t remember. Then he ask me how long have I been wheezing?I told him about 2-3 years so he took a look at my throat with a scope and saidmy voice box was red and swollen (probably from the cough I had for 2-3 years) thenhe ask how long did I have the ulcers in my nose. Once again I said about 2 years. He ordered aCT of my throat results were Tracheal Stenosis. I had a balloon dilation (it was 50% closed) the biopsy shownothing. My ENT suspected WG but all theblood test was neg.

About 2 weeks later I called him I found a hole in my nasalseptum (nasal perforation) for my ENT this was the deciding factor so he took abiopsy and referred me to rheumatology.

Three weeks later I am at the rheumatologist the biopsydidn’t say much so we went over everything else in my medical history andstarted ruling out everything. The onlyreasonable conclusion is WG. So Docstarted treatment of low dose Prednisone 5 MG 2x a day, Methotrexate 2.5 MG 4xon Saturdays, and Folic Acid 1 MG 1 a day except Saturday.

I couldn’t believe this was happening, I thought when alltest came back everything would be neg. I have so many questions? And sometimes just research doesn’t help. Ithink talking to others will.

[HopeinTN]

Welcome! Having family around and a support system is a great start. Good luck to you and you've come to the right place.

[TammyE]

Thank you, Yes family is very important and they are wanting to understand WG. I am a little scared but reading everyones stories is helping me understand and feel better.

[Thakator]

Hi Tammy, and Welcome - - - Glad that you have found this site, sorry to hear of your entrance into the world of Wegs. Glad also to know that you are reading some of the personal stories herein - - they will help, as will many of the old posts. Please read the Medications section as well to get a good idea of the types of treatment protocol that are out here and to get multiple views and reactions to drugs that you are apt to run into. Best of luck, Ron

[drz]

You might be one of those whose Wegs is hard to pin down since the lab work and biopsy don't confirm it. You can still have it but it might be tougher to find doctors who are convinced enough about your diagnosis to treat it effectively. It sounds like your doctors are willing to start treatment now for it and hopefully you will see some improvement and relief before symptoms get worse. It might help to get a consultation from one of the GPA (new name) experts to help confirm the diagnosis and rule out other diseases that may mimic it very closely but usually respond to the same treatment. Best wishes for better health and welcome to our rather unique group of fellow sufferers.

[Al]

What, exactly, did the blood tests show or not show, Tammy? If you are referring to an ANCA test, it is worth noting that a certain percentage (about 10 percent) of WG sufferers are ANCA negative. In these cases, diagnosis has to be made primarily on symptoms--plus, when applicable, a biopsy.

As for your questions, ask away!

Al

[mishb]

Hi Tammy and Welcome.

As Katrina (HopeinTN) said, you have come to the right place to ask your questions.

I hope you find the answers you are seeking

Take care and as always .........

[chrisTIn@]

Hello Tammy, and welcome to the forum.
I hope you soon will find answers to most of your questions!

[Sangye]

Hi Tammy, welcome! I hope you're finally getting some relief from your symptoms. JanW is a member who also has stenosis and has done an extensive amount of research on it. It's worth your time to do a search of her posts. If she doesn't pop on here soon, then message her.

There are a fair number of people who don't test (+) for Wegs but have obvious symptoms of it. Some people will test (+) later on and some never do. I think your doc has made a good decision to treat it based on presentation.