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:hug2:

[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 :hug1:

[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 :hug2:

[John]

Debhaz22
Have you seen a kidney specialist? This is how they found my wg. I was lucky enough to catch it before damage to my kidney's. I am also new to the site and disease. Am still figuring out how to move around the site.
I thought wg primary target was 1st kidneys, then lungs, nose, eyes and ears. I am in northern KY. and have the greatest Dr's. In fact my kidney dr. saved my life, according to the other 3 drs, by putting me in the hospital for a week with 2 blood clots and phenomena. Hope you find some dr's that will help.
Let me know if you find out what is wrong.

[LillysMom]

I feel bad, you being so scared. It's always more frightening when you don't really know what is going on. My daughter is coming over tonight to use my computer to catch up with everyone. She has had Weg for over 20 years, and what you are going through I think will sound real familiar to her. Things will work their way out for you in a little while, I feel they will.
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[Debbie C]

How did it go today with the ent ,Deb ??? Were you able to get though to any drs. ?

[Lilly]

Oh Deb, I feel for u so much. You are in a terribly frustrating place that I would guess all us Weggies have been in at least once, if not more times!! When I was finally diagnosed with wegeners, thats when I realized doctors are not Gods, and they do not know everything! They are just like us, they just studied medicine, and it depends on what they have learned as to how they can help us. And their personalities definatly come into play also when they treat us. Some WANT our opinion, and want to know what we feel and think may be going on in our body, and make us feel comfortable opening up and telling them things and not rush us, etc......others think they know it all, and want to tell US what is going on in our body.....which is GREAT if they are at least listening to us and not making us feel crazy for the crazy things are happening to us!! We just need to find a doctor with a happy medium, and one who is open minded and will also consult with other doctors with other specialities, so they can figure it out. The Rheumatologist assigned to me in the ER called in an ENT and an Oncologist, and also Another Rheumatologist. They all Talked, then each did their tests on me for a week, then met again and consulted. Even then, They were "85%" sure it was Wegeners (this was 23 yrs ago) So thats what they started treating me for. As time went by, we became positive that is what I had, and I have had some awsome doctors!
Also, about you not healing...... After I had had wegeners for 17 years, I had a simple arthoscopic knee surg to remove cartlidge pieces floating in my knee. A simple surg that people have all the time. Well after I had it, my knee was never the same. It kept swelling, and I had to have it drained every 2-3 weeks, then I had 3 more knee surgeries, all arthoscopic, and after each one, my knee slowly just started falling apart! It would not heal, it basically turned to jelly. There was not a doctor I could find that would TOUCH my knee anymore!!!! I think the doctor that did all my knee surgeries was embarassed, becaused he was so well known for being such a fantastic surgeon for the football players at the University Of Alabama College!! He finally told me he just would not, could not do anything else to my knee. He gave me the name of a surgeon at UAB. A well known University in Birmingham, and he saw me for 2 minutes, and scheduled me for a Total Knee Replacement in 3 days. I was terrified that after the surgery, the bone would disinigrate around the metal that was drilled into the bone. But thank goodness, I have not had a problem with it at all except for pain, which I have lived with since the beginning, so pain is just part of life. Not just for us Weggies!
I say to you.....Dont be afraid to speak up! You dont have to be mean, just ask questions, tell them things that are happening that you dont understand and see if they can give you possibilities. Tell them what YOU think it could, or could not be. Just try to find a doctor that you feel that you and him can work togaher, and he wont be upset if you bring another doctors opinion in the mix. If a doctor is a smart aleck or mean or puts you down, I just think u should look elsewhere. I know you are scared and confused. You are very intelligent, I can tell, and you really do need to get treatment soon, very soon. The doctor who treated me for the first 10 years, he and I did many different treatments, as times changed and new treatments were tried. We settled on what was best for me, but he always asked me how I felt and what did MY BODY tell me, how did I feel about what we were doing. He also was constantly learning as much as possible about wegeners, as it was relatively rare when I got it in 1990. The ANCA is not a test that is a yes or no test. From what I understand, it is different for every wegeners pt, and they have to do them each visit and look at the average........I could b wrong, but thats how my rheumatologist explained it. If it fluctuates from the average it is for you, then something is going on in your body. Keep us posted!!! There has to be someone on here that lives close to you that can steer you toward a good doctor in your area. Ill be praying for you! Stay strong, dont give up, and go find that doctor that is going to get you on the right track. Write anytme to me if you just need to vent! Ill listen!! Ive been there, we all have. :)

[Lilly]

Hi John, welcome to the site. I am still learning my way around, but no matter how you get around the site, and while you learn, there are always things I learn and people I meet that are so awsome! I had ear, sinus and eye infections for a year before wegeners finally took me down, and all my joints in my body were involved and I could not walk anymore. Thats when I finally went to the hospital. (Oh, I forgot about the kidney infection I had that put me in the hospital about 6 mo before I was diagnosed) but it went away and I never had any more probs with the kidneys after that. I was about 2 weeks away from being critical, I had so many tumors in my lungs, and my nose was full of small tumors also. Im glad you have great doctors, soooo important!!!! I certainly hope that Debhaz22 finds a good dr soon. Nice to meet you!

[John]

Lilly
Sorry it took so long to get back to you. Today is a good day so I thought I would surf the site and maybe I will learn how to use it (: . I am applying for disability from teaching. Have 3 dr's that agree. Trying to stay away from people with colds or the flu as I was told my immune system is low. The classroom might not be a good place to be. Nice to meet you also.

[sectech1]

Are your lungs or kidneys involved? With the possibility of WG, have they looked at your lungs or kidney function? My symptoms started with a stopped up ear in early spring, and the docs said there wasn't anything to do about it! I had autophoney too, which was terrible!! Then before I knew it I was running a fever and having chest pain and ended up having multiple tests, including an open lung biopsy because my lungs looked so bad, and a 15 day stay in the hospital. The biopsy was what showed the WG, I had never even heard of it. It my doc had thought to check my ears more closely months ago maybe I wouldn't have the lung involvement! I wish you well!

[debhaz22]

Hi Sectech1, I'm sorry to hear all you went thru! When were you diagnosed? How long did you "know" something wasn't right until you finally had a diagnosis?
I lost some of my hearing in my right ear almost 2 years now, and they didn't do anything about it. (They didn't think it strange 1 ear had PERFECT hearing, the other was at 60%??) Anyway, I haven't been officially diagnosed with WG since my nasal biopsy was negative. I think I only have (or had back in last year 1 nodule on my lung). Do you always develop fevers? I haven't had any. My asthma has defiinately gotten worse the past year or so but my lung function test in Aug was normal. I'm on 4 asthma meds now. When I went for my 2nd hearing test last May the Dr. asked if I'd been tested for WG, I'd never heard of it, so went to my Rheumatologist, C-ANCA was positive but PR3 was negative. And here we are...STILL waiting for an answer...
:)

[windchime]

Hi Sectech1, I'm sorry to hear all you went thru! When were you diagnosed? How long did you "know" something wasn't right until you finally had a diagnosis?
I lost some of my hearing in my right ear almost 2 years now, and they didn't do anything about it. (They didn't think it strange 1 ear had PERFECT hearing, the other was at 60%??) Anyway, I haven't been officially diagnosed with WG since my nasal biopsy was negative. I think I only have (or had back in last year 1 nodule on my lung). Do you always develop fevers? I haven't had any. My asthma has defiinately gotten worse the past year or so but my lung function test in Aug was normal. I'm on 4 asthma meds now. When I went for my 2nd hearing test last May the Dr. asked if I'd been tested for WG, I'd never heard of it, so went to my Rheumatologist, C-ANCA was positive but PR3 was negative. And here we are...STILL waiting for an answer...
:)

Deb you definitely need to find a dr that will treat you. Are they waiting for it to jump up and slap them in the face? You only need one nodule for it to be a concern. They do tend to multiply if not treated. My lung function test were normal too. How long has it been since you had a chest CT? Ask your doc for one now. Do the asthma meds work? I've had a lot of tightness off and on in my chest since my bronch in Nov. The inhalers don't do much and the nebulizer works somewhat. I'm not totally convinced mine is the asthma. Instead I think it's related to the Wegs. Your's could be too since they have no idea what is going on in your lungs from what it sounds like. I can't remember if your Rheumy has any experience with Wegs. If you're near a University Hospital that might be a good option to finding one that is experienced with Wegs. Did you ever get through to Cleveland Clinic? Keep us posted and keep pushing your docs.

[OJSRLS]

Seems we are sailing on the same ship. I have had pos. then neg. then pos. ANCA test nasal biopsy was inconclusive. My Dr. said he prefers not to start treatment a positive biopsy. Since then sinuses are burning, nose runs, have congestion in my chest and now my ears feel like I'm at the bottom of a deep swimming pool. Will see the Reumy. on the 11th of Feb. maybe will get some answers

[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:hug2:

[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.

[windchime]

Debra C I have a very knowledgeable Rheumy here, but she wants to refer me to an academic center for evaluation. That is why I was checking out the online second opinion. Save me the physical trip and they don't do much with you in the flesh anyway. At least that's been my experience. I could still go to Mayo in Jax, but I don't know the rep of the docs there. I'll figure something out.

[annekat]

Deb, Johns Hopkins sounds good. One of our longtime members, Sangye, who has not been very active on the forum lately, and who knows a heck of a lot about WG and other health issues, goes to Johns Hopkins for her treatment and thinks very highly of the doctors and the vasculitis treatment center there. Her WG doc is Dr. Seo.

[Debbie C]

Yea Deb ,you should see if you can get into see him. He is supposed to be one of the best.

[annekat]

I believe his full name is Dr. Philip Seo. You might find something by googling him and also if you search this site you'll find mention of him by Sangye and probably others.

[debhaz22]

Ok, but don't they first have to agree to see me? Can I put in the fax that is like to be seen by him? Not sure how JH works, it's sounds like if you go you get see by more of a team which might be good in my case since no one really knows what this is.

[annekat]

I imagine any doc or team of docs there would be good. You could send a Private Message to Sangye and ask her how you should proceed if you want to see Dr. Seo. She might have other names to recommend, too. She wouldn't mind, she is a very helpful person, likes being helpful, and might remember you depending on when you joined, but even if she doesn't, you can tell her I thought it would be OK.
PS, no one knows why when we type Dr. Seo's name on here, it gets that funny line under it. I see it didn't happen one of the times. Weird.

[mishb]

PS, no one knows why when we type Dr. Seo's name on here, it gets that funny line under it. I see it didn't happen one of the times. Weird.


It's because the search engine for this site is vBSEO - you can see it at the bottom of your screen

[Alysia]

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. ????

maybe it is not the time for jokes, but can you tell the difference between a doc and God ? God doesn't think he is a doc....
don't give up Deb. with all respect to dr. VF, that she is wrong.
find yourself a doc who is willing to listen, to research, to get advice from others, to change his mind and appologize for that.
please continue to update. we love you and hold you all the way :love:

[Alysia]

. 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. .

what's happened Cindy ? :hug1:

[windchime]

what's happened Cindy ? :hug1:

I'll start another thread when I feel up to explaining the whole thing. Thanks for caring. :wink1:

[sectech1]

Sorry to be so long getting back to you! I was diagnosed in late August after a 15 day hospital stay. I had a broncoscopy, which didn't show anything, and finally an open lung biopsy, and this is what showed the WG. My lungs had nodules 2-4?) and a mass of inflammation and fluid in one lung. My symptoms were a fever, chest pain like pleurisy, and a cough. Before my hospital stay they kept giving me antibiotics but my fever kept coming back because the meds weren't helping my lungs. And finally on a Sunday I felt like I couldn't breathe and went to the ER. My blood count had dropped so low (6.9) that they had to give me 2 blood transfusions (I thought I had lung cancer until the results came back, thank god for that!). I'm trying to answer all your questions. I started having ear trouble in March 2013 and finally found out about the WG in late August. I had 3 large prednisone infusions in 3 days, then went on 50mg daily. Shortly after that I had 4 rituxen infusions, 1 each week for 4 weeks, then 1 rituxen every 2 months, for a total of 6 as of now. I did have a fever again over 2 weeks ago that went away on its own without additional treatment, but blood work revealed that my ANCA # was back up slightly, so I may have to get another infusion in 2 months. From what my docs have told me my treatment has been pretty standard? I really like my docs and think they care about me. I have a pulmonologist and an oncologist but no rheumatologist as of yet. I hope you can get some answers soon. I hope they are watching your kidneys, according to my doc WG can destroy your kidneys if not treated! I feel mostly good right now. I have seen an ENT who said my nose and ears look good right now and no followup until I have other issues. The treatment that I've received has definitely helped my ears, just hope they stay this way. Let me know how everything goes, I'm here if I can do anything.

[Juliesjewels]

I want to thank everyone who's commented in this thread. I've suffered from symptoms of vasculitis for almost 3 years. Weird but mine started in GI tract. Last summer nose started getting stuffy, next was crusting like crazy, so much crust that the crust actually closed the passageway for air. Over 6 months time my septum completely disintegrated!! Gone!! A huge hole where I used to have a septum. Went to ENT surgeon who immediately biopsied nose & ran labs. I was neg ANCA & neg nasal biopsy. This surgeon operated on February 11 & completely closed the massive hole with cartilage from my ear. Few days later I started having horrible joint pain. I could barely walk. Weakness in legs. Terrible muscle pain, extreme fatigue ... Went to rheumy who put me on prednisone. Felt much better but eight weeks after surgery a new hole in my new septum started. Back to ENT surgeon & he says yes you've got wegeners after he say my most recent labs (sed rate 28, high C-reactive protein, high serum creatine, several other abnormal findings). He took a second biopsy of nose.....three weeks later that biopsy is negative too and second ANCA test is negative. Now I've been on prednisone for 6 months throughout all go the high inflammatory lab work & on prednisone for biopsies. Back to rheumy yesterday and guess what....she says "legally" she can't prescribe steroid sparing drugs without a positive biopsy so she's weaning me off prednisone to see if something else crops up that she can biopsy!!!!

Well this thread inspired me to write a letter to her asking for her to refer me to Johns Hopkins!

I've had two episodes of a necrotic nasal septum, vision problems, terrible joint & muscle pain, stiffness upon getting up from a seated position, mouth & tongue ulcers which come & go periodically, profuse sweating (both night sweating & sweating along with exertion), various elevated inflammatory blood markers, extreme fatigue, shortness of breath with basic movements, and most importantly a poor quality of life because I'm not able to actively participate with my family. But she won't treat me for Wegeners. If I don't have wegeners, what the heck do I have?

Thank you for listening & for giving me the courage to ask for a referral.



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[drz]

This is why experts are so important. They can usually start treatment without needing a biopsy to confirm the problem. Some times providing the appropriate treatment and watching to see if helps the symptoms can be another way to help determine diagnosis of what is causing the symptoms.

[annekat]

This is why experts are so important. They can usually start treatment without needing a biopsy to confirm the problem. Some times providing the appropriate treatment and watching to see if helps the symptoms can be another way to help determine diagnosis of what is causing the symptoms. This is so true. There is a recent post where someone's doc said they cannot "legally" prescribe Wegs drugs without having a definite positive biopsy. That sounds like such a load of bunk. I know there have been several on here who have gotten treatment without a biopsy, after being evaluated by experts.

[drz]

It might be quicker and easier to self refer to a clinic with experts and have them request the info from your current doctors. I know Mayo will assist one in setting up an initial appointment and assume the other Weg Expert Clinics also have similar staff to assist a new patient.

[VictoriaBrady]

Hey MikeG-2012 I too have lost my sinuses to WG. I see Dr. Villa Forte, Sindwani ENT and Fritz (plastic surgeon) along with Perry (Cole eye clinic) all at Cleveland Clinic. My diag took years, I was a runner so they assumed it was allergies but after monthly infections and lots of antibiotics a local ENT did biopsy, but didn't have the experience to treat WG. Saw local remuie who over drugged me. Clinic saved my life and face. I am new to this forum and need help getting disability.

[Jaha]

I also see Dr. Villa-Forte and a pulmy Dr. Choi. I may need to see a ENT up there as I am starting to have trouble with my throat Welcome to the forum, sounds like you have been thru a lot.

[BookNut]

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 have also been having a terrible time with Cleveland Clinic returning my calls. I have given the details in a post under the general WG chat forum. I should have put it here. My whole experience has been a nightmare of bureaucratic incompetence. I will be interested to find out if you are successful in getting someone to get back to you. No one in my doctor's office has ever returned a single one of my calls. i am wondering if the patient service has deteriorated recently. I had always heard such good things, and have been shocked by my treatment.

I sure hope you get a difinitive answer soon, as well as doctors with some empathy!!

[BookNut]

how have things gone with Dr. Choi? The doctor I am trying to work with is Dr. Daniel Culver. i would be interested in your experiences with Dr. Choi. I have invested 8weeks trying to get help from Dr. Culver's office and really am out of time. Bit maybe next summer.....