Waiting on results with lots of questions!

[JGregg]

Hello all,

My name is Josh, I am from a little town near cedar point in Northwest Ohio. It's now the end of April and I am still taking more tests and awaiting results as well. I have been sick since January with the common so called bronchitis systems. After numerous trips to th Er along with steroids, anti and inhalers nothing really worked as I continued to cough violently day after day until three weeks ago when I broke a rib from coughing. After one more trip to Er they finally admitted me after running cat scans on my chest and head... My blood pressure was beyond high at 196 over 140. Being as I am fairly young at 37 and in pretty good shape this was bad being as I've never smoked a day in my life. After a short stay at the hospital I was feeling much better and released with an appointment with a lung specialist. This past Thursday I had my meeting with him and after a brief discussion of the mystery of what I have going on, he wanted me to see an ear nose and throat specialist and wanted more tests ran. After 45 seconds he rushed back into the room and put his hand on my shoulder and said I think I know what you may have... That's when I heard of wegeners disease for the first time in my life... I just kinda smiled and laughed it off until he told me it was something rather serious if I indeed did have it. My future wife and I have read up on it quite a bit and are still trying to get as much info as possible if I do have the disease. I have had headaches, had soreness in my joints like no other and most other symptoms other than bloody nose and cough producing blood. Seems as though in the last week or so my energy level has been way low and and with cramps in my legs and back occurring Daily. Also have had lots of rib pain on both sides, which I don't think is common with the broken rib... There is hope still that I may not have this disease, but I'm feeling more and more that there's a great chance that I do.
if anyone can give me any insight it would be greatly appreciated. I have 4 girls I wanna see graduate and walk down the isle and anything I am reading is leaving me with even more questions about the disease and the outlook on life if I do have it.

Thank you all for anything you may have for me and my family.
Josh

[Dirty Don]

Welcome, the hard way, to the group, Josh. Your journey, at this point, is very in tune with the journeys of many WG patients...the undiagnosed pains, aches, sometimes blood, cough, lung problems, sometimes eye problems, and so on. Not to say you have WG, but it sounds very familiar. Keep at your docs, get answers...thank the ENT for being on top of things! I don't know where Cedar Point is in relation to Cleveland, but the Cleveland Clinic is one of the best vasculitis centers...so, if you do have this wonderful little disease, please have your docs consult with someone there or go there yourself. As for seeing your daughters walk down the aisle...YOU WILL! Honestly! WG technology and protocols have advanced a great deal since the 70s. I almost died about 2 years ago, docs brought me back, kept me going, and here I am...feeling not so bad, and still golfing...and I'm much older than you!! LOL! Take care, ask questions, be assertive, you will do well I think! The best to you.

[drz]

You sound like you might be one of us. Sorry about that but glad you found this forum to get the info and support you need to deal with this life changing event. Listen to Don and take advantage of Cleveland Clinic expertise. Most likely your doctors know some one there they can call to get some advice on how to proceed. Consider going yourself in person too for a at least a consult if possible. And a big welcome to our forum.

[Pete]

Hi Josh,

Welcome to the forum. I'll echo Don's thought about Cleveland Clinic. I see Dr Alexandra Villa Forte in Dept of Rheumatology and Immunology, along with several other forum subscribers. She's excellent. I drive there from suburban Columbus (takes a little over 2 hours) about every 4 months.

This disease can be managed well. I was diagnosed a bit over 2 years ago, and like Don, lead a pretty normal life at age 66. Don's a better golfer than me, though!

Good luck and be well!

[Psyborg]

Yeah, you should definitely try to get in to Cleveland Clinic. You are, I think, the most conveniently located to it yet of our group. Don't get wrapped up in symptoms you don't have. Everyone seems to have involvement in different areas, but they can spread. With proper treatment you can expect a very good turn around.

[annekat]

Welcome, Josh, and if you have WG, or not, I'm glad you found us. It's the best place for info and support. Your lung symptoms sound a lot like mine, which developed after a couple years of ear and sinus issues and were severe enough to get me into the hospital for tests, which led to my dx a week or so later. A lot of us get dx'ed in a roundabout way like that, since so many of our symptoms seem like other common ailments and WG can smolder for months or years before suddenly breaking out into a severe flare.

You are lucky to live in the same state as the Cleveland Clinic, even if it's a bit of a drive. Definitely worth checking out, and I remember hearing that people haven't had to wait too long for appts. with Dr. Villa Forte, who is one among several specialists there. In the meantime, if there's a wait, or you choose to just have your doc consult with a specialist, get a dx and have a doc prescribe treatment ASAP. It's important to start chipping away at the progress of the disease with the suitable meds. Did you have a biopsy, either lung or nasal? That is usually the definitive method of getting a dx, and one from the lung might be better, since that's where your main problems are. It sounds like the docs you are working with are on top of things for now.

Don is right about your likelihood of having a fairly normal life, seeing your daughters walk down the aisle, knowing your grandkids, all of that. Most of us, with proper treatment, manage quite well at functioning and doing the things we want to do. That is all assuming you actually have WG! Maybe you will get lucky. Keep us posted!

[JGregg]

Thanks everyone for your kind thoughts and words. I will be getting more tests done this coming Monday, including a biopsy of my inner nose... They took one on my tricep last week as I broke out in what they thought was a allergic rash from my medicine. Thinking now they believe it wasn't that at all. I have been on high doses of presidone for almost two weeks now and am on the weaning out stage I guess I'd call it. With one half pill to take tomorrow. My next lung Dr appointment isn't until June 6th though. This was a concern of mine that if they think I have it then why schedule my appointment over a month away. I too have a normal family Dr appointment in two weeks amd am thinkin I may need to get something set up in Cleveland before June. I'm sure like you all were in limbo at some point and just wanted answers and correctly diagnosed with what you had so you could get going on treatments eating right and anything else that may help. Seems like the little things wear me out quickly and getting up and walking around the house has me in little sweats. Wasn't sure if that's part of this or medicine as well...lol. Once again thanks to you all for your words of wisdom and encouragement. Means a lot to me and my family I assure you. With still hope that I do not have this disease, I understand that if I do, I'm not alone and like you will do all I can to live a normal life. May you all have a great day.

thanks again,
Josh

[JGregg]

Also one last thing... Prolly a dumb question so sorry. Has anyone had any issues with their mouth being real sore and taste buds being beyond messed up... Feel like I have sores on my tounge though I don't see anything. But certain things I have ate before such as chocolate just plain taste horrible and spacey kinda... This could be from breathing treatments I guess but figured I'd ask as I was eating a salad for lunch it didn't taste so swell..lol

thanks
Josh

[Kodiak]

Here's hoping that you do not have Wegeners, but you will do well with treatment if you do, and live a long life. I think you need to the see the specialist as soon as possible. Navigating our health system can be very frustrating, but do not give up. You must advocate for yourself, no one else will! Your symptoms of fatigue sound very much like steroid side effects. Keep up the good work of eating right and staying hydrated.

[Dirty Don]

Also one last thing... Prolly a dumb question so sorry. Has anyone had any issues with their mouth being real sore and taste buds being beyond messed up... Feel like I have sores on my tounge though I don't see anything. But certain things I have ate before such as chocolate just plain taste horrible and spacey kinda... This could be from breathing treatments I guess but figured I'd ask as I was eating a salad for lunch it didn't taste so swell..lol

That feeling is most likely the meds...I've had it off and on. Also, the mouth is the worst place in the body for infections, so have that checked.

[annekat]

I'm glad you are getting a nasal biopsy, though if that isn't conclusive, I'd think they'd want one from the lung, which is a more invasive procedure but more likely to be conclusive, as I've learned on here. So you are on a short pred taper.... I had several of those before dx when they thought I was just prone to sinus infections. If you are dx'ed, you will have a much different pred experience, on it long term, starting with high doses, and finding it even harder to taper when you get down to the low doses. That info surprised me when I learned it on here but am now starting to experience it as I hover around 12.5mg per day. Been tapering from 20mg. for the last couple of months.

As for your delayed lung appt., yes that seems like quite a wait, but if you are dx'ed via the biopsy, then they can start serious treatment and it won't matter as much. I'd keep calling, though, in case of cancellations, and also see about hooking up with Cleveland if you can. That would be the best place to deal with all your symptoms, conditions, and treatments in a cohesive and comprehensive way.

I did have various sores in my mouth, sore gums, etc., earlier in my WG. They all improved and pretty much disappeared with treatment. I have lost my sense of smell and can still taste but, like you, find it less than satisfactory. It seems to have gotten worse lately instead of being bad early on. Yours sounds a little worse at this point. Chocolate still tastes good! Some other things don't so much. Everyone is different, and these things can improve... don't know if your breathing treatments could be doing it, but it sounds plausible.

[Alysia]

Hi Josh,
I cant add more info, only to welcome you.
I hope you will soon find out what it is.
if it is WG, there is at least one benefit of having WG: being a member here, in this rare group. since I came here Im feeling much better, not alone anymore and using the info to get myself a better treatment. the people here are amazing, so kind and generous.
I believe you can get back to normal life and I wish you, and everybody here, long lasting remission.

[HopeinTN]

You have found the right place. Welcome and good luck with your appointments!

[Pete]

Hey Josh,

I had a messed up sense of taste for several weeks after diagnosis. It eventually returned to normal. My mouth was never sore, but my gums were very sensitive and a bit irritated. This went away after a few weeks as well.

[mishb]

Hi Josh and Welcome to the group.

As others have already mentioned, this is a fantastic forum with an amazing group of people.
It was my life saver many years ago (and still is).........you can't trust google to tell you the truth, but the people who live and breathe it, will.

On the other hand, I hope that you don't have a diagnosis of WG .........let's face it.....sometimes, it just sucks

[drz]

Also one last thing... Prolly a dumb question so sorry. Has anyone had any issues with their mouth being real sore and taste buds being beyond messed up... Feel like I have sores on my tounge though I don't see anything. But certain things I have ate before such as chocolate just plain taste horrible and spacey kinda... This could be from breathing treatments I guess but figured I'd ask as I was eating a salad for lunch it didn't taste so swell..lol

thanks
Josh

During the early stages of treatment I remember clearly how food and drink tasted bad. It took awhile to enjoy eating again. I think it was side effect of some of the meds or treatment.

[Debbie C]

Hey Josh..just want you to know that if it turns out you do have WG that you are diffenently not alone. We are all good listeners, can offer you what knowledge we have and will share in your ups and downs. But lets not get ahead of ourselves,wait till the biopsy comes back and are they checking your blood anr urinalisis (sp) ? If it turns out you are a part of this family Cleveland is one of the best places to go. I live in Youngstown (east Ohio ) and I see Dr. Gary Hoffman there,They can usually get you in right away so by all means don't wait till June..Good luck and keep us posted

[JeanMarie]

Hi Josh & welcome to our little family.
Pre diagnosis was the scariest time for me. I felt like I was falling apart. So even if you do have wegs things will get better & you'll definitely see those girls grow up!!!
Treatment is getting more effective all the time!! Have all the tests done & it would be great if you can get to the Cleveland Clinic!!
Best Wishes,
Jean Marie

[Marci]

Welcome Josh, My WG was dx by a nasal biospy and the ANCA test. It helps when you know for sure and can then start getting the right treatment. I go to the Cleveland Clinic for treatment and after attending the VF symposium there on the 30th I feel even more secure with the care I'll get. Keep us informed how what's happening.