Cannot figure out what to do next

[debhaz22]

(This is from frustrated and scared...) I have seen 3 Dr.'s this past week. First the ENT who did my nasal biopsy 8 weeks ago who admitted he doesn't know why I am not healing and again said he believes even with a negative nasal biopsy, it is WG; then my Internist who is sure the reason my nose is not healing and now I have a perforated septum is Autoimmune, then I went to see my Rheumatologist today, who also doesn't know why I'm not healing and have the very large hole in my septum. The Rheumatologist said that without a nasal biopsy that is positive for WG and a postive PR3 he won't start any treatment. (I have had a positive C-ANCA for at least 9 months). He is going on the notes from Cleveland Clinic in 9/13 when I saw Villa Forte who said she doesn't see typycal WG it may be "atypical". (At the time I saw her I Sept I had none of these symptoms.) Yes, I told him today that I thought nasal biopsies aren't very conclusive. He agreed. And also I asked aren't there people who have WG and even have a negative C-ANCA? He said yes. He tried to scare me saying if you want me to start you with treatment I'm gonna "blast" you with it. Nice, huh? I told him I certainly don't want to be treated for something I don't have but I also don't want this to get out of hand before someone diagnoses whatever it is. It is 6 days now I have had a call into Villa Forte with still no call back. Tomorrow I go for a second opinion to a new ENT. I do not know what to do. I have all these Dr.s telling me different things. I JUST WANT AN ANSWER!

[MikeG-2012]

(This is from frustrated and scared...) I have seen 3 Dr.'s this past week. First the ENT who did my nasal biopsy 8 weeks ago who admitted he doesn't know why I am not healing and again said he believes even with a negative nasal biopsy, it is WG; then my Internist who is sure the reason my nose is not healing and now I have a perforated septum is Autoimmune, then I went to see my Rheumatologist today, who also doesn't know why I'm not healing and have the very large hole in my septum. The Rheumatologist said that without a nasal biopsy that is positive for WG and a postive PR3 he won't start any treatment. (I have had a positive C-ANCA for at least 9 months). He is going on the notes from Cleveland Clinic in 9/13 when I saw Villa Forte who said she doesn't see typycal WG it may be "atypical". (At the time I saw her I Sept I had none of these symptoms.) Yes, I told him today that I thought nasal biopsies aren't very conclusive. He agreed. And also I asked aren't there people who have WG and even have a negative C-ANCA? He said yes. He tried to scare me saying if you want me to start you with treatment I'm gonna "blast" you with it. Nice, huh? I told him I certainly don't want to be treated for something I don't have but I also don't want this to get out of hand before someone diagnoses whatever it is. It is 6 days now I have had a call into Villa Forte with still no call back. Tomorrow I go for a second opinion to a new ENT. I do not know what to do. I have all these Dr.s telling me different things. I JUST WANT AN ANSWER!

Take it from me who had FIVE doctors (yea, they call themselves that) telling me that "You are not sick enough to have Wegeners!", GET ANOTHER OPINION!

SIX DAYS?!?! Way too long for ANY doctor to ignore a patient. Personally, I'd have a call into Cleveland Clinic multiple times DAILY until I heard back from them.

My waiting 2 years after I started having serious sinus issues cost me the lining of both of my sinuses. My right sinus lining will never be normal again because of the weg damage. Several of the turbinates in my sinuses are GONE because of the damage. My sinuses are a MESS because the quacks I was previously seeing would not look at each others' notes and see that between the four of them, I had the top SEVEN or EIGHT symptoms of the disease.

It's time for you to stop being the quiet sick puppy in the corner, and start being the BULDOG who will mow the docs down until they listen to you and DO SOMETHING!!

I feel for you, trust me!

MikeG-2012

[debhaz22]

Hi Mike,
Can I ask where/what Dr. FINALLY helped you? I am absolutely desperate.
Thanks

[Pete]

Hi Deb,

I'd like to know what the doc who wanted to "blast" your symptoms had in mind. If he was thinking 100-150 mg/day if cytoxan plus 50-60 mg/day of prednisone plus bactrim OR monthly infusions if rituxan plus pred and bactrim, that would be a standard protocol to get the disease under control. If you call Dr Villa Forte, make sure she knows about your perforated septum.

Good luck!

[debhaz22]

Hi Pete,
I didn't even ask him what he meant by that comment. It was obviously for intimidation purposes and I didn't appreciate it at all so I just let it go.
I'll DEFINITELY call Villa Forte again tomorrow.
Thanks

[MikeG-2012]

Hi Pete,
I didn't even ask him what he meant by that comment. It was obviously for intimidation purposes and I didn't appreciate it at all so I just let it go.
I'll DEFINITELY call Villa Forte again tomorrow.
Thanks

I completely agree with Pete, find out what he really meant about blasting...

Not "A" call--multiple calls until you get a response!!

Go get 'em and think "I AM A BULLDOG, I AM A BULLDOG, I AM A BULLDOG!"

WOOF!

MikeG-2012

[Debbie C]

Deb,sorry to hear this. I was hoping for sure this rheumy would do something.Definately call Villa-Forte first thing a.m. and don't leave a meassage if she won't come to the phone tell them you have been waiting for 6 days ( is she on vacation ? ) for a return call and it she can't come to the phone have them get Dr. Hoffman. I know she takes care of his patients when he is gone so maybe vice-versa ??? THEN call your dr. that referred you to this dr. you saw today and tell her what happened. When you go see the "new" ent tomorrow don't leave there without answers or a game plan. Maybe you should also call John Hopkins and try to get into see either an ent or rheumy there. You definately have to get on some kind of meds. Also call that a**hole you saw today and ask him what kind of meds was he going to "blast" you with. Sorry to ramble , I feel bad that you are not getting anywhere but you got to stand up for yourself because to them you are just another number and once you walk out the door they don't care. Go get em tomorrow and don't take no for an answer.. Have some more bloodwork done ..things change from day to day

[pberggren1]

Oh Deb, I'm so sorry. I didn't realize you are in this bad of shape. I would be my right arm you have Wegs. To me this screams Wegs. I agree with the others, you need to call VF and scream loud hun. You need to go back there and be seen by the whole team. You need second opinions, but having said that I know my current doctor would most likely start you on RTX and pred and so would my previous doctor. But, what I would like to know, what is your CRP and ESR at as well as hemoglobin and WCC? Bottom line, you need an answer fast and treatment now. How far are you from UNC? I know there are good Wegs docs there. Is UNC possible for you? Could you just drive there and go to the ER?

[Alysia]

Hi Deb,
I echo the others. the same mistake was done with me. 2 false negative nasal biopsies (although endelss nose bleeding, crusting etc) made the docs think that it is "limited" wg and therefore for about 3.5 years I was only on pred and bactrim. even the acute onset which was lung infection that almost killed me, didnt convince them to give me more serious treatment because pred alone cleared my lungs. (aww, my good pred. love it) I didnt understand anything about it so I didnt know at that time that I should get something stronger.
but the wg-monster continue to be active in me all the time and more deterioration occured, then my doc try to give me Plaquenil (did nothing) and then Imuran (I vomit it) and then MTX (didnt help) and after having saddle nose and red eyes and ears infections and joints red and a bit of protein in my urine, FINALLY I got rtx. stil no remission. the more they wait with treatment, then it is harder to stop the wg-roller coaster.
maybe VF didn't get your message ?
take care. fight for getting best treatment. we are all with you. lots of hugs

[mishb]

Deb I totally agree with everyone else.

I just want to wish you luck for tomorrow and hopefully you will get some answers.

What I have always heard of Dr VF, it doesn't sound like she wouldn't call you back.......I too think that maybe she wasn't given the message.

Good luck and I will have my fingers crossed for you