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jamie
05-21-2009, 04:03 AM
After spending several hours reading just about everything on the site I have come to the conclusion that the people here are the most knowledgable people on WG I have come across and also seem more than happy to deal with questions and help in anyway they can.I apologise if the questions I ask have been answered elsewhere and you find yourselves repeating information previously given.
1.I wake up with different parts of me hurting in different ways on a daily basis sometimes the pain will last for 3 days or so othertimes for only a few hours,is this normal?
2.My Wg has eroded the bone between my nose and my eyesocket and as a cosequence any sort of sinus infection(cold ,flu,etc)result in my eye looking like i have been punched by mike tyson.has anyone else had wg affect their bones in this way?(I know jack has mentioned that he has bloodshot eyes which i do too)
3.i am increasingly tired and find that after 5 minutes or so of exercise my muscles become cramped and i cant continue(which is massively frustrating as i always been fit and active)is this as a result of Wg or as i suspect medication?
4.I have granuloma in my lungs and my left breast which is swollen to twice the size of the right breast and is very painful to touch.Ive just spoken to a breast surgeon after being referred to him by my Wg consultant and he tells me this is not part of my condition(although he knew nothing about WG).My gut feeling is that his opinion is wrong and this is connected to wg.Am i being paranoid or is this going on with someone else out there?
5.So far my WG has killed me 3 times with various parts of me exploding but thanks to jesus not quite wanting me for a sunbeam just yet i am still here.The problem i have is that i cant beleive that eventually i wont run out of luck and this thing finally get me.all of these incidents occured prior to being diagnosed and now i have a dedicated team monitoring me through blood tests ctscans etc i wonder if any of you can tell me if this disease needs to build up to cause this damage or if it can strike without warning to this degree?
6.My family worry about WG far more than I do as im of the opinion that worrying isnt gonna make me better or take this all away and is therefore a pointless exercise is there anywhere you can recommend(articles websites or anything) that will enable them to worry less and learn like me to just play the hand we have been dealt and get on with life without the worry?
I think thats enough for now i still have anither 12 billion questions but if you can help me with any of the 6 listed above i will be most grateful.
many thanks

Jack
05-21-2009, 04:28 AM
Hi Jamie,
I'll have a go at one or two of your questions, but I'm sure others will be along soon with more information. Bear in mind that this is only my own experience and I'm sure you know by now that we are all affected in different ways.

1. I sort of accept pain as going with the disease or side effects of the treatment. I usually have several bits of me that hurt, but most get better with time to be replaced by others. Not exactly as you have described your own condition I know. ;)

2. Not had bone erosion myself, but I know others have. My eyes were only bloodshot when I had an active episode.

3. Yes, we all get tired. I have a mid day lay down for an hour. Muscle cramps are more likely to be some sort of blood imbalance. I think a lot of us have had these too.

4. I would not rule this out as not being Wegener's related. I have a lung condition called Bronchiectasis which they say is not related, but I would say that it would be too great a co-incidence for me to get two serious diseases at the same time. No one knows everything about Wegener's!

5. It attacks some people more quickly than others. If you are lucky, you get diagnosed before major damage. In your case, you were not lucky, neither was I. :(
As far as it getting you one day, who knows? In my own case, I came to terms with it all quite a while back. But none of us can predict the future and when we try, we are usually wrong.

6. My family worry too. It is a serious illness.


Oh dear! I seem to have had a go at all 6 points! Not what I intended.:o

jamie
05-21-2009, 06:13 AM
many thanks jack your feedback is not only a godsend but also a releif:)

Sangye
05-21-2009, 07:49 AM
Hi Jamie,
Those are great questions. Jack's had way more time with Wegs than me, but like he said, we're all different, so I'll put my two cents in as well :
1. I have a lot of joint pain. It and extreme weakness/fatigue have kept me from exercising for more than 3 yrs. I might be fine (one joint, that is) and then walk a bit in the store. Within a few minutes or a few hours I can't use that joint. It can last for hours or days.

2. Yikes. I dunno.

3. Me, too. For some, magnesium helps. For me, cramping occurs when I am way past my limit. Once I hit that wall, the cramping and payback can continue for days. Fatigue is tricky-- it can be a sign that the Wegs is not under control well enough, a side effect of the drugs, or the result of fallout from the drugs or disease (eg, weakened adrenal glands from pred). This is where you really need a Wegs specialist to help figure out which it is.

4. Get another opinion. Wegs can affect any part of the body. Many docs don't know that. Also, you could have impaired lymphatic drainage from the breast, causing swelling and pain. That's very serious and needs to be addressed.

5. Wegs has almost killed me once. Conditions secondary to it have almost killed me several more times. I don't think anyone can say for sure if Wegs needs time to build up. From a holistic perspective, no disease just strikes out of midair unless it's related to acute, severe trauma (physical or emotional) or acute, severe exposure (eg, toxin, mold). Most diseases take a long time to smolder first.

6. We worry because we're uncomfortable dealing with the unknown. (Will the Wegs flare up again? How bad? Will it kill me? Will it impair me further? Are my drugs harming me? Is there anything else I could be doing? The list goes on.) I think learning to make peace with uncertainty is the key for Weggies and the people close to them. I've found the more I make peace with it, the more those close to me relax, too.

Doug
05-25-2009, 08:12 AM
After spending several hours reading just about everything on the site I have come to the conclusion that the people here are the most knowledgable people on WG I have come across and also seem more than happy to deal with questions and help in anyway they can. We are a varied and concerned lot. Glad you found us as you have experienced a much more severe case of WG than all but a few of us. As the intent of this site is to help as many Weggies as come to learn from it, your specific experience and knowledge will benefit others! I apologise if the questions I ask have been answered elsewhere and you find yourselves repeating information previously given. Trying to find an answer when you suffer the early stages of treatment is compounded by the rareness of our BFF. If we can allay your concerns and pump up your knowledge with our varied experiences, you will be better able to take on the task of Super Patient, directing your doctors toward the right path when necessary.
1.I wake up with different parts of me hurting in different ways on a daily basis sometimes the pain will last for 3 days or so othertimes for only a few hours,is this normal? Unfortunately, you become a connoisseur of pain when you live with WG. ("Connoisseurs of Pain" sound like a good punk band name!) It gets better.
2.My Wg has eroded the bone between my nose and my eyesocket and as a cosequence any sort of sinus infection(cold ,flu,etc)result in my eye looking like i have been punched by mike tyson.has anyone else had wg affect their bones in this way?(I know jack has mentioned that he has bloodshot eyes which i do too) You may have to have orthopaedic and plastic surgery before it's done. I'm sorry for you, yet I think this makes you a pioneer on this site for this type of WG circumstance. What you write about your experiences, even if no one active on this site has the condition, may bring out inquiries from people who are registered and just haven't contributed personal experiences or questions yet. It happens. Helping others deal with these worst case senario effects of WG is your payback, your service to others.
3.i am increasingly tired and find that after 5 minutes or so of exercise my muscles become cramped and i cant continue(which is massively frustrating as i always been fit and active)is this as a result of Wg or as i suspect medication? Think about what you body is battling just now. Though roughly 92% of people who develop WG can live, with medical care, roughly 8% don't. You are lucky to find that point where you tire out. Take it easy with exercise, but mark your current "poop out" point, write it down, then check it again in a few weeks. I know! You'll be checking it every time you exercise! Don't. Just create that monthly record, and you will discover when you are making progress. Little steps at first, my new friend, little steps! As others have counseled you, take it easy. Don't over do it.
4.I have granuloma in my lungs and my left breast which is swollen to twice the size of the right breast and is very painful to touch.Ive just spoken to a breast surgeon after being referred to him by my Wg consultant and he tells me this is not part of my condition(although he knew nothing about WG).My gut feeling is that his opinion is wrong and this is connected to wg.Am i being paranoid or is this going on with someone else out there? Find a WG specialist who has had WG patients (the more the better). Over and over you will read us tell Weggies- you- to become your own best patient advocate! We are here to help you with ammunition to use in this process, and to back you up when you find doctors aren't treating you as a VIW (Very Important Weggie!).
5.So far my WG has killed me 3 times with various parts of me exploding but thanks to jesus not quite wanting me for a sunbeam just yet i am still here.The problem i have is that i cant beleive that eventually i wont run out of luck and this thing finally get me.all of these incidents occured prior to being diagnosed and now i have a dedicated team monitoring me through blood tests ctscans etc i wonder if any of you can tell me if this disease needs to build up to cause this damage or if it can strike without warning to this degree? It can take on a lot of manifestations. Have faith. You have only two outcomes: you are one of 92% of Weggies. Or you are part of 8% of Weggies. You have a sense of humor, I think.(Or faith- I am unsure what you meant by the Jesus reference, but think it was humor. At least I laughed!) Nine to 1. Reasonably good odds. Humor and/or faith will take you a long ways.
6.My family worry about WG far more than I do as im of the opinion that worrying isnt gonna make me better or take this all away and is therefore a pointless exercise is there anywhere you can recommend(articles websites or anything) that will enable them to worry less and learn like me to just play the hand we have been dealt and get on with life without the worry?
I think thats enough for now i still have anither 12 billion questions but if you can help me with any of the 6 listed above i will be most grateful.
many thanks

jamie
05-26-2009, 04:27 AM
I cant thank all of you wonderful people enough for the time and effort you have put into responding to my questions.You have already helped me more than any doctor I have spoken to in 2 years and just to know these things are part and parcel of our shared condition and not some mad random effects my own body has decided to exhibit is a huge releif not only to myself but also my family.If i feel I can contribute to any post or questions through my own experiences and help others i will without hesitation.

Jack
05-26-2009, 05:13 AM
Feel free to make any contribution you wish Jamie. It all sparks discussion and who knows where it will lead (our threads tend to wander a bit, especially in the direction of rabbits!). Discussion is not limited to specific medical discussion, you can post just to have a moan and get things off your chest or even if you are just feeling low. Even the strongest of us do at times!

Doug
05-26-2009, 06:05 AM
Well, you know the standard question Weggies ask is, "Ehhhh. What's up doc?!" What do you expect! :):):):)

Jack
05-26-2009, 06:18 AM
Which one is you in the avatar Doug? ;)

Sangye
05-26-2009, 06:22 AM
Jack, you are hilarious.

Doug
05-26-2009, 12:53 PM
The happy fellow on the right, of course. The serious fellow on the left is the doctor. :D