Good morning from Scotland

[Kimbangu]

Hello everyone, I have recently joined this forum and would just like to say Hi. Hello from Bonny Scotland! ( 34 degrees Fahrenheit, grey skies, 95%humidity- are you jealous or what?)

I am just realising I am at the start of a very long journey; less than 5 weeks ago I had never even heard of WG.

My story is a different one in many ways. I am particularly interested in any comments anyone may have about the rapidity of the onset in my case , and the absence of any of the "classic" symptoms in early stages.

I'd also be interested in any thoughts anyone may have about the rapid, breezy 100% confidence with which my local hospital has already diagnosed WG. In fact my exact diagnosis- as detailed on my medical records- is "Vasculitis- Wegener's?".....

Thank you for reading this, I hope to learn a lot from you all and- I hope- have some fun along the way.

You can read my sorry tale in "Weggie's Stories". And yes, I already know I am a total idiot for not taking the joint pain seriously at first. Don't rub it in!

[Jack]

I'm not sure that Wegener's has any classic symptoms, it is a systemic disease and can attack any of the bodies soft tissue. The progression of the disease is also unpredictable and can rumble on for years without diagnosis or kill you in a few weeks.

[Sangye]

I agree with Jack-- the "classic" Wegs only seems to exist in the textbooks.

And hey, from someone who had increasingly severe and crippling joint pain for almost a year before going to an MD, don't worry about anyone on here rubbing your nose in it!

I like that one of your goals is to have some fun. You sure found the right group.

[Doug]

I make it three. There is no classic onset with this disease. You can read every story in this forum since Andrew started it, and easily establish that each person's experience, while oftentimes similar to others, varies in significant details. I had seven sessions of Plasmapheresis, came out of my full-blown WG with lung, sinus and kidney involvement (AKA "severe WG", as if the other forms are substantially "easier" to deal with.) relatively uneventfully, and haven't had many of the complications others have had even though my doctors rated me a likely one to crash and burn when they first had me to deal with. Some of the details match your experience, many don't.

[pberggren1]

Kimbangu:

Are you a musician? Beautiful guitar!!

[Kimbangu]

Nah, no such luck. I am a ( recently retired) oil rig worker, Although I have played guitar since the age of 14, and been in a few amateur bands in my time.

The guitar is a beaut, isn't it...my retirement present to myself.... it is made by a German company called Framus. I had actually bought it before "the curse of kimbangu" struck and now my right hand isn't doing what I tell it ( plus the pred seems to be giving me the shakes) but I am determined to bash out a few tunes, nevertheless.

I should also mention that I seem to have gone a little bit deaf recently. maybe no bad thing! .....when my right hand is trying to learn how to play guitar again.... but I will succeed. There are so many inspirational stories on this site that my own personal ambitions seem pretty modest in comparison.

Nice to meet you!!