new to wegener's I think?

[Vera]

Hi! My name is Vera and I think I have Wegener's. I started with symptoms about two years ago and went to my family doc. He said I was congested and needed to drink more water. When I felt like I had a hole in my nasal septum, I went to a local ENT. He said I did indeed and scheduled me for a biopsy. The biopsy came back negative for Wegs or cancer and he said I was fine. I went back to him twice more when I didn't feel any improvement. He said just to make sure and use my netti pot and vaseline and it would be fine. He told me lots of people have holes in their noses. Finally I went back to another doctor in my family doctors practice. He ordered a cat scan and it showed a growth in my sinuses. My doc recommended I go back to the same ENT that had blown me off. Because we only have one ENT practice in town, I made an appointment with Cleveland Clinic and saw Dr. Knott. He did a biopsy in the office and he results were inconclusive. He then did another biopsy under general anesthesia and removed the growth. This was negative for Wegs. However he felt the growth might be cast off cells of some kind. He said I had MRSA and put me on antibiotics for two months as well as an antibiotic nasal rinse and an antibiotic ointment. The recovery from the surgery was awful-I had things coming out of my nose the size and hardness of peach pits. I wound up in our local hospital for four days getting IV antibiotics. When I went back to Cleveland for my followup, Dr. Knott said he wasn't sure if I even had MRSA and my nose sure looked like someone with Wegener's. He said he would prescribe steroids but didn't feel comfortable doing so because I was so far away. (I live about four hours away}. I assured him I could come as often as necessary but he wanted someone local to moniter me. My local doc didn't feel comfortable with it and was supposed to call Dr. Knott. I fee like neither one of them is doing anything right now and am very frustrated. My ears hurt and my knees hurt a lot! I get out of breath after walking for a short while or up a flight of stairs. So..... if anyone is still reading after this long boring story please please give me your advice...... Thanks so much! Vera

[elephant]

Hi Vera, Dr Carol Langford is a Wegeners Specialist at Cleveland Clinic. She is very good and you would like her. Sound like you need to see her. Your symptoms do sound like Wegeners disease. I know how frusterating this can get, hang in there. We are here for you.

[Sangye]

Vera, I agree with Elephant-- Dr Langford is the one to call. It sounds like you need to get her overseeing your care. I suspect your Wegs is on the rise.

[chrisTIn@]

So..... if anyone is still reading after this long boring story please please give me your advice...... Thanks so much! Vera

I'm not bored at all. I can understand your frustration quite well, and I sure hope you see a real Wegs-specialist soon.
Good luck Vera!
Please let us know if you succeeded in getting the right appointment!

[Chris G]

When I went back to Cleveland for my followup, Dr. Knott said he wasn't sure if I even had MRSA and my nose sure looked like someone with Wegener's. He said he would prescribe steroids but didn't feel comfortable doing so because I was so far away.

I'm not bored in the least Vera..........I feel your frustration - lots of us have had a difficult time getting diagnosed.

I guess I'm really surprised that Dr. Knott didn't set you up with Dr. Langford while you were at the Cleveland Clinic. Especially since he said your nose looked to him like a WG nose! I would ask Dr. Knott for a referral to Dr. Langford. She's highly recommended by many in this group - I'm sure she won't leave you hanging.

I'll be attempting to get a referral to her soon myself.

Oh, I just noticed you live in Lansing!!! I live in Mich too! Lake Orion. (My hubby went to State). I see docs at U of M, but like I said, I'm going to try for a referral to Cleveland Clinic....as soon as I can figure out how to do it diplomatically.

Keep us updated.

[Sangye]

Chris, I understand wanting to be diplomatic with your docs but remember that this is your life. A good doc won't be the least bit offended if you ask to be referred to CC. One thing I've learned with Wegs is to make hay while the sun shines. :wink1:

[Vera]

Thank you so much for your advice! Finding this support group has been so amazing. I have been reading and learning so much! I read about people that feel just like me. I have felt like such a hypocondriac for so long. My family does not understand why I do not always feel like doing things or cleaning the house. Anyway, thanks so much. I am going to try to get in with Dr. Langford

[Chris G]

Thanks Sanjye - While I'm waiting for a return call from my doc today, I'll be working up the nerve to ask for referral.

Good luck Vera! Please let us know how it goes.
Hopefully I'll be right behind you.

[Sangye]

Thanks Sanjye - While I'm waiting for a return call from my doc today, I'll be working up the nerve to ask for referral.


LOL It can be difficult to get in the right frame of mind. Patients get really stressed over asking for a second opinion or referral but to a doctor it's an everyday event. Really.

[pberggren1]

I have asked for many referals and second opinions and have never had a problem. In fact most of my docs, especially the ENTs, want me to get second opinions.

[Vera]

I have a migraine specialist in Ann Arbor who was surprised that I was so uncertain as to my diagnosis. I had an appt with him on Monday and he said he would talk to Cleveland Clinic to figure things out. I called today and all they could tell me was that yes he had made contact with my doctor. When I asked what they had talked about I was told my Ann Arbor doc had left for the day so maybe I will hear something tomorrow! I also called CC and asked for an appt with Dr Langford but was told she only takes confirmed cases if Wegs but I could see one of her associates. However when they heard the kind of insurance I have they said I would have to go through a financial screening phone call. Has anyone else had to do this? I saw my ENT at Cleveland Clinic and had surgery without having to do this, in fact we tried to see someone before the surgery to see how much it would cost and were told not to worry about it. Anyway, just my frustration talking. Hopefully I don't get kicked off this board for being too depressing!:sad: Thanks Vera

[elephant]

Vera, no one is going to kick you off, this is a very trying time and you want to get and feel better. My Rheumatologist refered me to Dr Carol Langford, she sent my medical information to her so that Dr Langford would have all the info on me. Can you get a doctor to refer you to the Cleveland Clinic and How about the ENT at CC?

[pberggren1]

Kick you off? We need you Vera! :biggrin1::hug3::thumbsup:

[Sangye]

ROTFL.... You gotta remember that most of us are on prednisone and have had our lives turned upside down (many times over!). If you wanna win the contest for most depressing you're just gonna have to get in line. :flapper:

[Vera]

Oh my gosh! This board is so GOOD for me!

[pberggren1]

You bet it is Vera. You belong here.

[Chris G]

I also called CC and asked for an appt with Dr Langford but was told she only takes confirmed cases if Wegs but I could see one of her associates. However when they heard the kind of insurance I have they said I would have to go through a financial screening phone call.

Hang in there Vera. Don't worry about the insurance screening hickup. It will probably be a 2 minute phone call with someone in billing, prior to your appointment.

Anybody have experience with Dr. Langford's "Associates"?

My diagnosis is technically "suspected Wegener's" because we don't have biopsy confirmation, although they've been treating me for WG for 4 months. Perhaps I don't qualify to see Dr. L either.

And in case anyone's keeping track.....no, I haven't asked for the referral yet :sad:

[marlo511]

I also called CC and asked for an appt with Dr Langford but was told she only takes confirmed cases if Wegs but I could see one of her associates. However when they heard the kind of insurance I have they said I would have to go through a financial screening phone call.

Hi -- I did not have a confirmed case or a referral and was able to get an appointment with Dr. Langford with no trouble. That was just a few weeks ago. I used CC's Web site to request an appointment: https://my.clevelandclinic.org/webcontact/webappointment.aspx?PhysicianFirstName=Carol&PhysicianLastName=Langford&PhysicianSuffix=M.D.,%20MHS,%20FACP

Did not have to do a financial screening either .... Frustrating that they are putting up hurdles for you.

[Chris G]

Thanks for that info Marla. I saw their online appt request form, and was wondering whether a doctor's referral was also needed. Did you simply list all of your suspicious symptoms? How long after submitting your request were you able to get an appointment?

[Vera]

That is really interesting! Have you seen Dr. Langford yet? We already owe CC quite a bit of money since I had surgery there right before Thanksgiving so I don't know if that is why they want to do a financial screening? I am filling out some forms for financial help. I am going to try and request an appointment through the web site. Thanks so much for the information. If you haven't had your appointment yet, I hope it goes really well for you! You too Chris!

[marlo511]

Thanks for that info Marla. I saw their online appt request form, and was wondering whether a doctor's referral was also needed. Did you simply list all of your suspicious symptoms? How long after submitting your request were you able to get an appointment?

Hi -- Appoint was about 3 weeks out. I didn't have an official referral, just briefly summarized symptoms/reason for appointment. Good luck!

[Vera]

Hadn't heard anything from the clinic and had such a depressing day yesterday. Then all of a sudden today I got a call saying a had an appointment with a doc in the Vasculitis center right after my scheduled ENT appt at CC in a couple of weeks! So Yay!! I'm really excited!!! Reading this board has been SO helpful! Chris, have you contacted Cleveland Clinic yet? I've been thinking about you.

[Sangye]

YAY for you, Vera! Now you're cookin' with fire. :thumbsup:

[pberggren1]

YAY for you, Vera! Now you're cookin' with fire. :thumbsup:

I prefer to cook with gas as well over electric!:biggrin1:

[Chris G]

Awesome news Vera! I can't wait to hear how it goes. No, I haven't contacted CC yet. I see my U of M rheumies on Tuesday. They have just changed my med to 30mg injectible mtx. I need to give it a few weeks to see if it will work. On Tuesday, I will tell them that I've been thinking about making the trip to CC. Obviously I don't need their permission, or even a referral. But in the end, I want them to work with the CC docs.

It seems like everyone is getting appointments at CC pretty quickly. I don't want to go there while my meds are in the middle of kicking in (or not). I'd like to be able to give them a yes or no, it's working or it's not.

Anyway.....yay for you!

[drz]

Awesome news Vera! I can't wait to hear how it goes. No, I haven't contacted CC yet. I see my U of M rheumies on Tuesday. They have just changed my med to 30mg injectible mtx. I need to give it a few weeks to see if it will work. On Tuesday, I will tell them that I've been thinking about making the trip to CC. Obviously I don't need their permission, or even a referral. But in the end, I want them to work with the CC docs.

It seems like everyone is getting appointments at CC pretty quickly. I don't want to go there while my meds are in the middle of kicking in (or not). I'd like to be able to give them a yes or no, it's working or it's not.

Anyway.....yay for you!

Just tell them you have been wondering about getting a consultation at CC and ask them if they can help set one up for you and if they know anyone there they can recommend. They can usually get you in quicker to see someone who is a friend of theirs.