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.

[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.