I filled in the, most recent Poll, regarding my Type Of Vasculitis and still had to answer 'Other'. Just as a quick 'Straw Poll' how many of us have had to do this-more than once? Just interested, nothing more. ( I mean I have ALWAYS been an 'Odd Ball', all my life-no really.)
Belated Happy Easter everyone.
AndrewT
Hi Andrew, hope you're keeping as well as you can. I thought that l was the only one in the "Odd-Ball" Club, nice to know there's at least two of us. 
My Mother always said "I was born bloody awkward and still bloody awkward" , bless her. Depending on the poll, I have nearly always filled in the "Other" section.
Sally
Yes, my diagnosis is mononeuritis multiplex secondary to vasculitis. Although it appears I have had symptoms all my lifev(nose bleeds, sinus problems and urticaria), no form of vasculitis has been specified.
My version is a Vasculitic type of systemic lupus + primary immunodeficiency (all early onset, way before systemic immunotherapy began)
I actually think there might be quite a few of us who can't quite find a formal diagnosis. I have 2:
Undefined autoimmune disease - probably WGA Vasculitis - and being treated as such (although treatment came about more by chance than design).
Undefined bleeding disorder - being treated with anti bleeding medication (Tranexamic Acid) - although it does seem that the immune suppressers are the treatment which keeps it most in check.
I used to get quite stressed by the lack of a formal diagnosis, but I'm more laid back about it now.
Even my Rheumatologist calls me complicated!!! I had to go for the other option too as mine is classed as unclassified
Well thank you 'everyone'. We are NOT alone, we have each other, for company. Diagnosis, or not, Categorisation, or not...We ARE still al ALIVE!
Actually I'm glad that there are 'others', like, but not like, me.
Very best wishes to all.
AndrewT
I felt the same when I saw the same poll again. We know the classification is the hardest bit when you have a diagnosis of vasculitis. Bad enough to have this disease. Let's not make it sound as if you are a failure if you haven't been classified because autoimmune diseases are complicated.
Hey Coniston,
Your NOT a failure, you are unique-just like all of us. Hang on Andrew, you might well say, how can we ALL be completely unique? Now THAT, with Vasculitis, is the easy bit!
Take care AndrewT
Incredible empathy. Thank you so much, Andrew. Best wishes, 🍀🌸
I know how you feel I am one of the odd ones too lol. They just tell me I have cnvs no one tells me anything
working diagnosis pan not confirmed
Maybe, we are the majority. 😎
We know many with 'undefined' Vasculitis or cross overs types. Eg: Takayasu and ANCA Associated Vasculitis. Kelly who has created the booklet '31 Things You Should know About Vasculitis' is pretty unique too, she also has cross over autoimmune diseases including Behects and Lupus.
We also know those who have a classification of a type of Vasculitis but also have another autoimmune disease Eg: Thyroid, Diabetes, Fibromyalgia
Many cases of Vasculitis can be complicated and complex and so very difficult to treat and manage. We find no two cases are exactly the same even if they are a 'type' .
I find it really difficult when children are diagnosed or not diagnosed as the case maybe and they seem to suffer terribly with rashes, joint pain, headaches, eye problems and tummy problems and really struggling with extreme pain and sickness, when they should be running about enjoying life and having fun but no one seems to getting 'on top' of what is wrong with them or controlling the pain. Some even go onto have kidney problems.
Most of the phone calls or emails VUK receive, which have increased to about three or four a day, are usually complicated cases, patients not getting a proper diagnosis or those who just have not a clue what is happening to them and are besides themselves with fright and are very scared. Sadly we receive calls of deaths too. Two this week and it is only Thursday, it makes me very sad. One was certainly not diagnosed in time after being ill for sometime and was only in her 50's the other lady was diagnosed 15 years ago, the same year as my John but she died from complications from the disease.
So yes there are many like you Andrew, unique, and has someone said below you could be in the majority, 'odd ball' cases. But you always make me smile Andrew because you always seem to smile too. 😊 .
I am also pleased there is so much research happening at the moment for Vasculitis , not just the ANCA associated types but the other rarer types and that VUK can and is contributing to this research. 5 studies last year and more this year, thanks to all the fundraisers and donations from patients, family members and friends. 😊
Take care
Susan
Still waiting for anca results
Churg Strauss Association-does it still exist-diagnosis advice please
Covid Vaccines - Can you still book them?Still waiting for vasculitis diagnosis - now liver issues
suffering from Wegener granulomatosis ,Had 2nd infusion of retuximab but still having haeavyness in foot,&pain?
