Cannot figure out what to do next

[debhaz22]

OMG! I'm not alone with this craziness OJSRLS. I have been to now 9 Dr.'s since May of 2013 and NO ONE has any answers
Now I have a pretty good size hole in my septum and cartilage coming out every 3-4 days.
When did yours all begin? And how?
Thanks
Deb

[windchime]

Deb it sounds like you need to get back to Cleveland Clinic or at the very least have your docs consult with them. I feel your frustration and I'm there myself right now. Came home from the Rheumy on Tues and cried I was so frustrated. Unfortunately that doesn't get me very far. So I too am trying to figure out my next move before I see the Pulmy on Wed. Don't give up you just need a good wegs ENT it sounds like.

[annekat]

I am really angry about these docs who will not treat you just because there is no positive nasal biopsy, when all the signs point to Wegs, and when the hole in your septum gets bigger and bigger. They could easily prescribe you some CTX or MTX, along with 60mg. pred, to get you started until things get sorted out. If those treatments helped, then they would know that it is indeed WG or some similar autoimmune disorder. They could always switch to RTX at some point if that was deemed preferable. But for me and some others on here, the CTX and pred cleared things up fast, and it was such a relief to know that it was being brought under control.

Keep pushing to get in with Dr. Villa Forte, or maybe someone at UNC, as Phil suggested! Otherwise get another local rheumy who can treat you in the meantime. They may not all be as boneheaded as the one you've got.

[Debbie C]

Hey Deb, I was hoping to hear that you were able to get in at John Hopkins. Did you ever call Villa-Forte and let her know what is happening? If you don't get something done soon your nose will be a real mess to try to repair at the rate it's going. Please make some calls

[OJSRLS]

First symptoms were scleoritis (forgive the spelling) in my right eye. The eye Dr. saw something he didn't like and ordered a series of blood test one of which was the ANCA that came back positive. Family Dr. called and said it could be Weg. and I was to get to the Reumy. in Des Moines the next day. Since then it's been up and down with Pos. and Neg. ANCA test.

[windchime]

Deb I was just on the Cleveland Clinic web site. They do online second opinions. Basically you gather all your info, pay and send them your records. It takes from 10-14 days after they get it assigned to a doc to get the results. Price for Wegs is $745 which is about what it would cost to fly, spend a night or two, rent a car etc. This is not covered by insurance. I think this is what I'm going to do since my docs are so confused about me. You can check it out on their web site and see if it's something you think would work for you. You may be able to request that Villa Forte give your online second opinion.

[Debbie C]

Cindy,she went up and saw Villa-Forte and I quess she didn't do much for her. I see Dr. Gary Hoffman there. But like I was telling her John Hopkins is closer and there is also a reumy in Jacksonville ( I believe ),Rebekah would know for sure that used be from the Cleveland Clinic that would be good for you also. My kidney dr. who knows alot about wg. has a friend that is a dr in Melbourne that I believe is knowledgable in it. Even if you don't have kidney involvement you can still go see him. Mine said if I ever had an issue to let him know. Just because it's the "CLEVELAND CLINIC " doesn't make them the best. As a matter of fact it was on the news that the University of Cleveland is one of the best hosp. in the country. Good luck ,I hope you find a good dr. soon.......both of you.

[annekat]

Deb H. did say that when she first saw Dr. Villa Forte, she didn't have the septum hole or much in the way of symptoms. Maybe Dr. VF would be interested to know how things have changed since then. I'm actually pretty appalled that Deb isn't getting the care and treatment she needs, because no one really seems tuned in to what is going on with her. This is a serious disease we are talking about and the docs should all be more proactive.

[debhaz22]

First off, thank you all for being so supportive and "feeling" my frustration, that helps so much just to know you all understand what it's like dealing with these Dr.'s... Deb C. knows how depressed I've become over this the past 2 weeks. I finally did get a call back from Villa Forte couple weeks ago and she said to come back to be re-evaluated. I don't think she believes I have WG, and I pray I don't, so I feel like I'm being a bother to her, or that's the impression I'm getting from her. I know she is a wonderful Dr. My Dr's here were upset that she didn't do more testing...when I was there in Sept. I have nodules in my lungs (from CT), my asthma was uncontrolled (her words) and yet she didn't think it was necessary to see a Pulmonologist there. ???? Instead I saw an ENT who I'm sorry, but I am surprised his head even fit thru the door! Yep, a little conceited. He saw nothing in my nose except blood from all the bloody noses I get. Ok, this is turning into too long a story, anyway today I called my Internist here in SC (she's really the only 1 pushing for someone to tell us what the hell is going on), and left a message asking her to write me a referral to Johns Hopkins. So I will get all my labs...ready to fax to JH and see if they will see me. I guess that's how it works there. Thank you to all of you, I appreciate it so very much. And see Deb C, I DID "get my ass off the couch and got something done"! Ha ha, luvya

[pberggren1]

Deb, I know how frustrated you must be. But don't give up, be persistent.