New Member from Chaska (a suburb of Minneapolis) Minnesota

[Minneapolismark]

My name is Mark Schneider and I am 52 years old. I've had symptoms of Wegener's going back all the way to preschool, but thought they were random events. This included ear infections, massive flare ups of canker sores (100 at a time), double vision, bleeding gums, bleeding sinuses, joint and muscle pain, profuse bouts of sweating, chest pain, panic attacks, loss of voice later in the day, throat constriction that made it difficult to breathe, ringing in the ears etc.

About 15 years ago I felt that something "broke" inside me metabolically and my symptoms became more pronounced. Something happened with my GI tract as well and I began to eat constantly in order to alleviate GI tract pain. Over the next ten years I gained 150 pounds. Everyday life became very difficult. I would start to work in the yard, or get ready for church, do housework etc. and after a few minutes experience restricted breathing, massive sweating, vertigo, chest pains and nausea, so I would stop working and sit down. Doctors could find no cause, so my wife decided I was a lazy liar and eventually left me. This caused a great deal of heartbreak and stress and I had my first major flareup a year or so after she left.

About eight months ago I began to experience severe joint and muscle pain. It was pretty bizarre because it would be my right knee for a few days and then my left ankle. My hands then my stomach, and so on. I had terrible facial pain, dental pain and sinus pain.

I eventually became largely paralyzed, although this too was intermittent. I remember the first time I realized that I was well and truly becoming paralyzed when my mind casually told my leg to swing into the car and the leg just sat there. I had to reach down, grab it and drag it into the car.

I knew instinctively that I was dying and so I poured myself into work as much as I could. My team was managing the technology installation in a new Children's Hospital and I felt that helping sick children was a great final legacy for my life.

Doctors were hopeless. They thought I was crazy because my symptoms were bizarre and changed constantly.

Finally I saw a rheumatologist who diagnosed me during the first interview. I was very, very near death.

I have been on disability now for a little over three months and am making great progress. I am still having severe shortness-of-breath issues along with the sweats and chest pains. Tomorrow I go in for a stress EKG with contrast to see if I can start exercising. I am weaning off Prednisone and will not be sorry to see it go from my life.

I had just started dating a beautiful, intelligent and amazing woman through eHarmony when this flare up started. I told her that she obviously didn't sign up for all this and we could just be friends. She thought about it for a few days and said she was already hooked. Since time looks different when you are borrowing it, we got married last week barefoot on a beach in Florida.

I feel like a jerk for being on disability, but that is what it is there for.

Although this all sounds like a downer, I have never been happier or more at peace than I am right now. I wasn't just a lazy slob who couldn't beat gingivitis. I am not crazy. I am not a liar. I am not weak or exaggerating. I am a man who happens to have a very serious, debilitating and incurable disease.

Now I want to get this all under control and get on with my life.

I wish there was more solid information on the following with Wegener's:
1. exercise (strength, flexibility, endurance, cardio)
2. diet (anti-inflammatory foods etc)
3. understanding which symptoms are drug complications and which are Wegener's complications
4. the role of stress management in recovery
5. how to prioritize my energy "budget" to make sure my basic life requirements are met (cleaning, shopping) and my relationships are sound. (ideas for fun things to do with kids, friends, spouses that don't require much effort or energy.)
6. Tips and tricks to manage life. I bought an iPad when I was in really bad shape so that I could message my care team, order groceries, research, read books, watch TV and movies etc while lying in bed. I was too weak to use a laptop, but the iPad was a wonderful tool.

[Jack]

Hi Mark and welcome to the group!

You have certainly been on one hell of a journey and are very lucky to have made it this far, but you have come to the right place to meet people who understand exactly what you have been through and are still having to cope with. Your list of questions is entirely understandable and you may well get answers in time although it is not going to be that easy! The problem is that due to the random nature of the disease which you have already experienced everyone's case is different. You have to first build up an understanding of your own condition in order to work out the answers and that is where the forum can help. In the meantime, you can expect to be bombarded with advice and also questions which will all be supported by experience and consideration for your well-being.

[elephant]

Welcome Mark, I am so happy that you found someone who understands you. What other meds do you take to keep Wegeners in control. When you complained of GI symptoms did they diagnose you with something? Colitis? Are you seeing a Wegeners specialist in Minnesota?

[pberggren1]

Well Mark:

First I will say welcome to the Forum. I am sorry you have this stupid disease but obviously you are very strong about all this and very intelligent. I am sorry your wife left you but you are obviously happy with your new wife and she is understanding of Wegs so that makes such a huge difference. I am 34 and live with my parents. I was diagnosed in 2003 and had to move back in with my parents and have not really worked since or not had any gainfull employment. Please feel free to ask any questions or vent any time on the Forum, that is whay we are all here for.

[Sangye]

Hi Mark, welcome to the group! I was trying to imagine being a little preschooler with so many bizarre health problems. You've known such suffering. I'm glad the tide seems to be turning. Even though it's awful to learn you have something like Wegs, at least it's an explanation, there is treatment and you can go from there.

Here is some info just for you: http://www.wegeners-granulomatosis.c...need-know.html

To answer a couple of your questions:
Exercise-- I suggest starting in a pool. Not swimming-- that's too much at first. Ask about getting Aquatic Physical Therapy. They can teach you exercises and once you learn them you can go from there. You won't believe how much more you can do in water compared to land. You can make much faster progress by starting in water.

Diet-- Google anti-inflammatory diets and go from there. The Wegs specialists seem to be in the dark about its benefits but anyone who's tried it knows it works. It won't cure Wegs of course, but changing your diet can reduce how much pred or other drugs you need. That's certainly been the case for me. I also use Ayurveda, specifically aimed at pacifying Kapha and Pitta.

Wegs vs other complications or damage-- That's the job for a Wegs specialist.

Other members will pop in and add to these answers and address your other questions. I just wanted to get you started.

[Psyborg]

Welcome to the board, you've had a rough trip it sounds like. I wouldn't feel bad about being on disability, that's what it's there for as you said. Only so much you can do until your symptoms improve. Being in MN are you working with the Mayo Clinic?

[JanW]

Hi, Mark -- I have the same question as Bob -- being that you already live in the state, you are very lucky to be close enough to Mayo. Particularly if you having breathing issues, Ulrich Specks is the guy to see -- pulmo who has done tons of research on WG.

[Minneapolismark]

I was diagnosed with colitis when I was in my 20s, but it just disappeared when I was about 25. It might be coliitis... This is such a bizarre disease. I just generally feel like crap all the time and then have to carefully sort out what kind of crap and where it seems to be focused.

I know I am preaching to the choir!

[Minneapolismark]

Hi, Mark -- I have the same question as Bob -- being that you already live in the state, you are very lucky to be close enough to Mayo. Particularly if you having breathing issues, Ulrich Specks is the guy to see -- pulmo who has done tons of research on WG.

WOW! Thanks, that helps a ton. I didn't have a name until now. The Mayo is an impenetrable fortress unless you have a "cheat code" to get past the "end boss" as my video gaming children say.

I will see if I can connect with this guy!!!

I was diagnosed by a sweatheart of a guy, and he diagnosed me in 45 minutes, but the treatment doesn't seem to be going anywhere. Granted my lab tests are all looking good, but I still have all kinds of symptoms and problems.

[Psyborg]

Mark, you might try this list on the Vasculitis Foundation website: Vasculitis Foundation Medical Consultants | Vasculitis Foundation

That one has several of the doctors at the Mayo clinic if Dr Specks is not available in a reasonable amount of time. I'm very glad I went to the Cleveland Clinic for my care and that list is where I found my Doctor (Villa-Forte). I think anyone associated with the Vasculitis Foundation would be an excellent choice. Nothing against your doctor at all, but the disease is just rare enough that most doctors just don't know the proper treatments.