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Kimbangu
12-10-2009, 07:37 PM
Greetings from Scotland. Here’s my story.

Firstly thanks for providing this forum. I have recently been diagnosed with Wegener’s and I was really REALLY hoping that such a forum would exist on the web. I wasn’t disappointed. Thanks for being here.
It’s funny how you can be in denial at times like these and not “make the connection”.
I was admitted to hospital and had a lung function test, chest X-ray, heart ultrasound, kidney triopsy, many blood tests and they rapidly arrived at a diagnosis. - Wegener’s.
During the “diagnosis” phase, I was continually being asked if I had suffered from sore throats or sinus trouble in the preceding months. …… I can honestly say that I have never at any time, had any symptoms of this type.






Once again, thanks for providing this forum.

crackers
12-10-2009, 08:44 PM
hi and welcome to our WG family.your story is a sad but familiar one but at least you are now getting the treatment you need.i'm not too sure about WG being agricultural based as we have people from many different walks of life.there doesn't appear to be one single cause but stress does play a big part in this disease.please browse through the other posts on here as it may help you to understand this disease more.come back soon,we have great people on here who can help and advise.
john.

Jack
12-10-2009, 10:14 PM
Not so sure about the relationship with stress. I was on a beach in Italy when my first symptoms showed themselves!
My own pet theory is that it was triggered by an infection from poluted sea water, but who knows?

elephant
12-10-2009, 11:16 PM
Welcome Kimbangu, I had the same type of joint pain and blamed it on my kids ( playing too much with them). Your really lucky that you got diagnosed so fast. I think WG is genetic and something just triggers it ( stress, virus, bacteria, chemical). We are all exposed to these things, so why us? My family has autoimmune diseases ( graves, arthiritis, Nodosa). I wish someone would study every single person who has WG.
I am jealous that you live in Scottland. Actually someday would love to visit and travel to Europe. Keep us posted on how your doing.:)

Sangye
12-11-2009, 02:07 AM
Hi and Welcome to the group!

I had the exact same onset-- only excruciating joint pain for 8 months, then my lungs got involved. It wasn't until I had lost 50% of my blood, was gasping for breath and was completely crippled by pain that I went to an MD. (I'd been trying to treat it holistically, thinking it was Lyme's Disease)

Any time I get a new doc they also ask if it started with upper respiratory symptoms-- that's the "classic" onset. I thought mine was a rare onset mechanism, but I've seen a lot of people with the same pattern.

My first rheumy (non-Wegs specialist and major idiot) also told me not to research Wegs online. I didn't have easy internet access anyway, but was offended by his patronizing attitude. He was an idiot. I know I said it already, but it bears repeating. :D

As you can see from the previous replies, no one knows the real cause of Wegs! My first symptom began 2 weeks after a bad fall. I also had high levels of stress for a few years preceding the onset. Lots of lifetime exposure to toxins, including the home I was living in at onset. I had lived in Ghana as a Peace Corps Volunteer 20 yrs prior, and had received numerous vaccinations. My immune system was never right after that. Had malaria 3 times, too. Malaria does seem to have a curious connection with autoimmune diseases-- a history of it causes false (+) on some tests.

Kimbangu
12-11-2009, 02:25 AM
Interesting.

deb
12-11-2009, 04:49 AM
Welcome, Kimbagu. I also sometimes had excruiating and roaming joint pain. I had the sinus symptoms for a long time prior and one thing I have learned is that Wegeners does affect my ability to think clearly when it is active. So when the pain moved around I thought I was just crazy. I am so glad you got a quick diagnosis and found doctors that actually recognized WG. I hope and pray that your remission is close at hand!

Deb

katwoman
12-11-2009, 07:49 AM
Welcome to the group, I have to make sure none of my friends read your story, I had been to South Africa a couple of years before I got really sick with WG (swollen joints, white lungs, damaged kidneys with blood in urine, purple spots on joint areas) and every single one of them asked me was if it was something I picked up in South Africa...my goodness it was a battle to explain to them that it was auto-immune (I said like lupus - does someone catch lupus - No!)

I don't remember feeling stressed before I got ill, but I was burning the candle at both ends and was hugely into getting fit at the time, the weight was dropping off with no effort (1-2kgs a week) - I just thought I was going super..lol! Like many other stories, mine had been brewing for a while with blocked tear ducts and nose bleeds/sinus issues for probably 12 months prior.

I can also relate to people saying 'you appear to be in good health' - no they don't understand the seriousness of it! I am currently having a flare and get the comment 'well you don't look sick' - what do people expect me to have a growth of some description or missing limbs or be thin and sickly - ain't gonna happen on Prednisolne, that seems to be human nature hey and what do we do - I just :) smile!
katwoman

jola57
12-14-2009, 10:31 AM
Kimbangu, your Fall diagnosis of wegs may be right on, at least for me. I started in November. The frozen shoulder - I have been complaining of that and later with hip pain since 10 years ago. I had a CAT scan and bones scan which showed moderate hot spots but was not investigated any further. in 2006 I couldn't move and finaly had a neurologist suggest vasculitis.

Doug
12-14-2009, 04:14 PM
Mine started in late March with joint pains that moved and varied from day to day, culminating in lung involvement. Oh, yes, I urinated something like dark syrup for months (in color), but couldn't convince myself I had a problem that wouldn't clear up on its own...! I didn't have any skin issues that I recall, but kidneys, clearly, were involved. I've never heard a number relative to how much damage was done, but have been told I lost some kidney function.

Most of my ancestry is Scottish. I think there is a genetic connection, with an environmental trigger. Infectious agent. Chemicals. I hope they learn what its all about in my lifetime, as I'm sure everyone else does. I also live in a rural area. I remember the city sending a truck up and down alleys in middle to late 1950s, putting out a fog of DDT. I remember being in the backyard and having the fog come over me. I was 10 or less when this happened. I worked in a factory where carcinogenic solvents were used in the process. The fumes were heavy in two areas, and people working there or making trips through there (QC inspectors) were assaulted daily with the fumes.

So many questions and some answers starting to pop up.

Oh, yes, the "You have potentially fatal disease but why do you look so damn great? issue. There are people on this forum preparing for major holidays who are not far removed from the worst of the disease. Families and weggies alike can lose track of how potentially serious their disease is. That isn't to say you should distribute your worldly good right now, but it does mean you need to attain a new maturity, one that helps you recognize the seriousness of your disease.

Yet, somehow, through studying up on the disease, by being your own best advocate with your doctors, by adjusting to a "new normal" that may or may not place physical restrictions on you while you look good enough that people don't believe you are seriously ill, you have to live life to the fullest possible. There are horrific photos on the internet of the worst things that can happen to weggies. It is correct, then, that there is a case for staying off the internet. The case for going to the internet, however, is that an informed person needn't fear the worst that can happen because he or she is NOT in denial, but in control of his or her disease: knowledge enpowers the weggie to talk with doctors on the doctors' level (or closer to it), and informs the weggie in ways to present his or her medical condition to others.

Personally, I use a cane on and off. When in public, that signals I have some medical issue necessitating a cane. As for the "You look good, how can you be ill" crowd, I tell them simply that one in 10 people who get this disease die, that I was almost that 10th person, that I still have residual issues, but nothing so severe at this point that I can't live a nearly "normal" life. :)

coffeelover
12-15-2009, 12:41 PM
Hello and welcome Kimbangu!

I too had what I called "traveling pains" that would come and go with not cause or effect. Many times, I felt that I could tell when the weather was changing prior to the meterologists that are typically not correct in their assessment. It got to the point where my husband would ask me how I was feeling so he knew what to bring in the car with him on his sales calls for that day. (eg-umbrella, snow pants etc):D
I had always had sinus issues, but did not get any REAL help until my tracheal stenosis became an issue. Even after passing out numerous times, I was just "wishing" it away, but eventually smartened up and went to get ENT help. He in turn threw me into surgery to open my airway and did some WEG testing.
That anxiety you talked about came for me too when the ENT was Testing me for WEGS. Because all the online "stuff" you find regarding this disease makes it seem so scarey. Unfortunately, my ENT is not a WEGS specialist and his testing proved inconclusive to WEGS and so I convinced myself that it was not what I had...UNTIL I went to see my rheumy who was treating me with malaria pills for a disease she called palendromic rheumatism. She noticed my trach and decided to do further testing in which the results were....... that I get to be a part of this forum and wonderful group of people.
I too try to stay away from Stress...quite difficult as I have 3 children in college and a job that deals with people on a regular basis and sometimes too much family. (did I say that?)

On a side note....I am most impressed with you people that have traveled. Sangye, 20 years in the Peace Corp! Commendable!
Kimbangu-Africa...WOW!
Jack Italy---beautiful!
Katwoman-South Africa-awesome!

I am out of adjectives, but equally impressed with everyone on this support group. Just the roads we all have traveled with this disease is adventure enough and I am proud of all of you. Your journeys inspire and encourage the rest of us.
coffeelover

Sangye
12-15-2009, 01:11 PM
Sangye, 20 years in the Peace Corp!
It was just 2 yrs in the Peace Corps (20+ years ago)! But it was one of the best things I've ever done. I also lived in Spain for 3 years and taught school in the early 90's.

Maybe that's why my Wegs joint pain stopped being so migratory after 3 months-- it was all traveled out.... :D

katwoman
12-15-2009, 06:52 PM
[QUOTE=coffeelover;7874]

Katwoman-South Africa-awesome!

It's a great hobby (but expensive) and opens your eyes to a big wide world out there! I've been to places and seen things around the world that is shocking/sad but also amazing/breathtaking but most of all it makes me appreciate where I live and what I have...with or without WG!!:)

Doug
12-17-2009, 10:53 AM
[QUOTE=coffeelover;7874]

Katwoman-South Africa-awesome!

It's a great hobby (but expensive) and opens your eyes to a big wide world out there! I've been to places and seen things around the world that is shocking/sad but also amazing/breathtaking but most of all it makes me appreciate where I live and what I have...with or without WG!!:)

I have to agree with you. The devil you know, you know!

Kimbangu
12-18-2009, 11:08 AM
Looking back, there's a strange aspect to the "denial" part of it all. We live and learn.

katwoman
12-18-2009, 06:04 PM
Yet I was trying to "laugh it off" , mainly because the symptoms were so weird- I even gave it a nickname - "the Curse of Kimbangu"... as though it was just some African thing that would go away of it's own accord. We live and learn.

Laughing it off was my usual way of dealing with things, I remember my mum getting so upset and saying to me in hospital 'this isn't a joke' - I knew she was right but that is just the way I could cope with things, it seemed more logical then crumbling into a heap.

elephant
12-18-2009, 11:52 PM
Laughing releases stress, so it is very appropriate for us to laugh when were going through hell. :D

Sangye
12-19-2009, 01:53 AM
I laugh at the whole mess, too. Why not? You can laugh at it and still do what's necessary-- take drugs, follow dr directions, etc.... I think it 's funny that others put their judgments and "stuff" on sick people. They want us to "take it seriously" yet they also think it's "inspirational" when we can laugh through our troubles. Bleh to them. :p

Sangye
12-19-2009, 01:55 AM
The elevated intracranial pressure condition I have is called Pseudotumor Cerebri. That literally means "Fake Brain Tumor." It almost killed me when it began, almost blinded me completely within one day. So it's a serious condition. If I thought about it all the time, I'd never come out from under my covers. So I never refer to it as Pseudotumor. I always call it "My Fake Brain Tumor."

Pred is one of the causes of it, and when I had to go back on pred this summer it was pretty scary. My JHU docs took it quite seriously and said, "We're going to get clearance from the JHU Pseudotumor Team." I almost split my sides laughing. "The TEAM? Is it a FAKE brain tumor TEAM or a FAKE BRAIN TUMOR team?" It still cracks me up. None of them even chuckled. I guess the blood I was coughing up while laughing made it hard for them to find the humor.... :rolleyes:

pberggren1
12-22-2009, 10:59 PM
Hi Sangye:

I have been to Spain twice. Where exactly did you live in Spain?

Over and Out,
Phil of the north

Sangye
12-23-2009, 01:30 AM
I lived in Valencia for 3 yrs. Unless you went during Fallas (in March), you probably didn't go there. Nothing to see other than some saint's right arm in a glass box. I don't remember whose.

Kimbangu
12-23-2009, 08:56 AM
You got that right.

moyan
12-29-2009, 06:43 AM
So, maybe it isn't arthritis in my hip or tunnel in my arm, due to too many putergames.

Kimbangu
12-30-2009, 04:17 AM
So, maybe it isn't arthritis in my hip or tunnel in my arm, due to too many putergames.


Ha ha, yes, ........or malaria, strong sunlight, cactus stings or parasites! This WG thing is kind of hard to pin down....

Shannon's faith
03-12-2010, 03:38 AM
Deb, hello! I am so happy to see some one on here from dripping springs. My father lives in south Austin and in fact right beside dripping springs. I cant think of the name of the subdivision but it is 10 min from dripping springs and directly across from the Nutty Brown. And better yet I will be in Austin for 2 weeks the last week of May and first week of June this year. I would really like to meet you. I am 37 and a mother of 3 and have been recently diagnosed. I live in Kentucky. Let me hear from you. Shannon

deb
03-25-2010, 12:12 PM
Deb, hello! I am so happy to see some one on here from dripping springs. My father lives in south Austin and in fact right beside dripping springs. I cant think of the name of the subdivision but it is 10 min from dripping springs and directly across from the Nutty Brown. And better yet I will be in Austin for 2 weeks the last week of May and first week of June this year. I would really like to meet you. I am 37 and a mother of 3 and have been recently diagnosed. I live in Kentucky. Let me hear from you. Shannon

Hi Shannon, sorry it took a while to answer, my computer is down and the new one has not yet arrived. Welcome to the forum. I am so sorry you had to find us. I will keep you in my prayers for the 28th.

I would love to meet you when you come down. Nutty Brown has the best QuesoHomeFries. I am not too good at navigating this site as I have a old browser. I will try to get together with you once the new computer comes in and gets loaded.

I hope you can find a good doctor close to where you live as you will need them a lot, especially here at the beginning. How long has your dad lived in the Austin area?

ian anderson
05-19-2010, 09:00 AM
hi im also from scotland was diagnosed 15yrs ago and been to hell and back on every drug you can think of im now in process of waiting for 2 ops blocked tear duct shouldnt be too bad and my windpipe is closing up trachea stenosis looks like it could be tricky also had heart attack last august and had a stent fitted take heart my friend that which does not kill you makes you stronger stick in ill no doubt speak to you again all the best

JanW
05-19-2010, 09:43 AM
What kind of surgery are you getting for the stenosis, Ian. I had my first in March and am always interested in how they do it in other parts of the world. I'm in the NYC area.

hopey
05-19-2010, 02:17 PM
Hi
Where abouts in Scotland are you from? Im a 29 year old female from Edinburgh and have had WG for 4 years now.

ian anderson
05-19-2010, 06:00 PM
Hi
Where abouts in Scotland are you from? Im a 29 year old female from Edinburgh and have had WG for 4 years now. hi im from ayrshire irvine in fact the only person in irvine with this damn disease well its got to be someone why not me nice to hear from you 29 yr old female from edinburgh

ian anderson
05-19-2010, 06:06 PM
What kind of surgery are you getting for the stenosis, Ian. I had my first in March and am always interested in how they do it in other parts of the world. I'm in the NYC area. hi thanks for asking havent had surgery yet but they seem to think after my ct scan that theres no scar tissue only inflammation so they may administer steroid treatment with cyclophosphomide or stent ivehad it for 9months man oh man its like drowning every day hope this note finds you well my friend take care we"ll talk agn