The Curse of Kimbangu- A Scotsman's tale....

[Kimbangu]

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]

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]

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]

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]

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.

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]

Interesting, Sangye. Many of my family acquaintances have commented on the fact that because I spent half my life overseas, and the other half in a quite village, common sense would dictate that I MUST have picked it up overseas ...where every door handle is a rich source of infection. Yet I have been assured that this is not the case.

As for vaccinations, we got the lot too. I had also been taking malaria meds religiously.


The one strange thing I am finding at present is that when I tell people I have WG, they find it hard to reconcile the seriousness of the disorder with the fact that I "appear" to be the picture of good health. Which is all down to the Prednisolone of course.

Thanks for your kind reply, I hope to learn many many things on this forum.

Kimbangu

[deb]

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]

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]

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]

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.