New here from Kentucky

[sadpixie]

Hello. My name is Valerie and I was just given a "pending" diagnosis of Wegener's. All of my symptoms and blood tests are pointing to it but they are waiting to get a final c-ANCA on me before giving me the official.
It all started with a sinus infection and ear infection last November. Things cleared up fairly fast but I was left with constant nosebleeds. Fast forward to August of this year and they returned with a vengeance. I now have very little hearing in my right ear and my left ear is constantly stuffy. I have suffered with extreme pain through my sinuses and now have saddle nose.
I just recently got out of the hospital because the pain and pressure in my face was too unbearable to take and I developed Bell's Palsy. I felt great while on steroids in the hospital and even on the small amount that they sent me home with but as soon as I was done with the taper packs everything came back with a vengeance.

Any advice and/or tips would be greatly appreciated. I am a mom of two young kiddos and I am anxious to get things treated the right way and soon.

[Jack]

Hi,

Your symptoms do sound fairly typical of Wegener's although it does present in many different forms. Even the suspicion of you having this disease should be prompting your docs into urgent action, things can develop very quickly and even become life threatening even when showing few symptoms. I managed to lose my kidneys that way!

The doctors that you will generally meet will know very little about the disease and its treatment and this can be a very complex area. You need to seek out the help of a vasculitis specialist and you may also have to fight your own battles in order to get the treatment you need. If you have active symptoms, waiting around is not an option.

I'm sure others will be along shortly to give more detailed advice. This is a good site for you to have found and is full of compassionate and knowledgeable people. Feel free to ask any question or just have a good vent about the situation you find yourself in.

[elephant]

Hi Valerie, it sounds like you have Wegeners. Like Jack said you need to see a Rhuematologist who sees hundreds of WG patients. You are close to Cleveland Clinic in Ohio, that is where I go to see Dr Carol Langford. There is Mayo in Minnesota too. I too suffer from the sinusitis and the ears being clogged up almost deaf in the left ear, eye pain and I could on and on. So getting the right treatment with a WG specialist will help tremendously get this disease in control.

[JanW]

Welcome aboard, Valerie. I agree with the others -- get to a specialist if you can. Most docs (even rheumys) will have seen one or two cases of WG, if any, in their practices, and don't have the experience you need if the going gets tough (and it may). I have the saddle nose also, and frankly, there are very few other diseases in the world that cause it, so your doc probably has a very strong suspicion that you have WG.

How is your breathing. I ask because saddle nose often runs together with subglottis stenosis -- that is narrowing and scarring of tissue in the windpipe -- I have both, Brooke on this site has both, and at least one other person I'm not recalling right now. Researchers don't know why this is but it's quite common. My ENT calls it the 'classic stigmata' on the disease that he sees (because he repairs both).

That's one more thing. I would suspect that if you go to an ENT, one thing that he will want to do is repair that deformity. Be very careful about this! Although people always want to get it done as quickly as possible (I know how that feels, believe me), we are not the typical plastic surgery case, and surgery can really spiral WG out of control, if you aren't careful. People do have them repaired, but it should be done by someone who understands the disease and the use of artificial fillers/tissue is right out for us (which means it can collapse again if you get sick again but it's a risk you take if you want it fixed).

I know that this is a ton to absorb, and you want to concentrate right now on getting well, but I thought I'd throw it out there -- aren't many of us around here with 'the nose.'

[sadpixie]

Thank you for all the information. It makes me extremely nervous to wait until Monday to get a final diagnosis. I am currently only showing signs of involvement in the sinus and ear area but I know that can change very quickly and kidney involvement can be silent up until it gets bad. How do you go about getting in with a specialist? Will I need a referral from the dr.'s here? I am feeling pretty lost as to the next step to take at this point, the waiting game is awful.

[Sangye]

Welcome to the group, Valerie. I see my friends have already done a great job of prodding you to see a Wegs specialist! I'll just add this link for good info. What the Newly-Diagnosed Need to Know

I'm assuming since you were hospitalized and did blood work for ANCA that they also did general blood work and a urinalysis. This is necessary to make sure your kidneys are functioning okay. ANCA takes about a week to get back. Meanwhile, I suggest calling Cleveland Clinic and arranging an appointment. Whether or not your ANCA comes back (+), you still have some classic signs of Wegs and need an expert to direct care.

[sadpixie]

They did do general bloodwork but did not do a urinalysis.

[Sangye]

Hmm... I suggest you call your PCP and ask if you can swing by for a urine dipstick test. It only takes minutes, is inexpensive and will put your mind to rest while you wait for the ANCA.

[Thakator]

Hi Valerie,
My welcome to you as well. And, please do visit this forum often as it contains a wealth of information that will serve you well.

I too live in Kentucky and second the opinions you see on here regarding your need to be working with an up to snuff specialist on this disease. Trouble is, where are they? My experience was that I couldn't get an initial appointment with either the Cleveland Clinic or Mayo in Rochester for two months. I made the Mayo appointment and proceeded to try and get some answers here in Ky. in the interim - - answers and help, since I was clearly going downhill at a fairly rapid pace. Like many of us that you will find on here, my experience was also that things can happen quite quickly. Unlike many of us, I was fortunate in that I was able to find help close by and was able to get a definitive dx. by a rheumotologist who was on to the suspicion of WG from the very outset. Because she knows about the need for speed in our situation, she got me through the process of multiple blood tests, scans, examinations by an ENT as well as an Opthomologist (there can be signs of WG in the eyes), an open lung biopsy and into treatment in a fairly rapid manner - - before my Mayo appointment date came around. Didn't go to Mayo then since I didn't want to waste their time by going simply for a second opinion. May try again, however, if things don't seem to go well here. But, so far I'm quite satisfied with the care here.

If you are at all near Lexington and find yourself unable to go to Mayo or CC for whatever reasons or that they can't get to you for a couple of months, I would strongly recommend that you try the UK Clinic in Lexington. Specifically the Rheumotology Clinic. It can take two months to get an initial appointment there as well, so I would advise that you call directly and ask for an appointment with Dr. Hanaoka - - being sure to let whoever you speak with that there is good reason to suspect Wegener's and thus you feel the need to see her (the doctor) as soon as possible. I don't know if they will make you go the route of having your personal doc call to make the referal, but I'd try going the direct route first and most definately mentioning the WG. Dr. Hanaoka is very much aware of the necessity of acting quickly in these matters and if she hears of your plight I'm confident she will try to see you soon. And, she's good. Clinic # (859)-323-3900.

Please feel free to e-mail me if you desire any further insights as to my experiences in dealing with the UK Clinic. And, if you try to get in and are given a long wait time, please let me know and I will personally speak with Dr. Hanaoka to see if she can speed it up. Take care, Ron

[Sangye]

I know the other long-standing members will agree with me that going to a major Vasculitis center like Mayo is not just to confirm the diagnosis. I wish I could convey the difference between going to a non-Wegs specialist vs a Wegs specialist.