Vasculitis...what type do I have?

Firstly, I didnt realize there was people that I could relate to and talk to as my mother came by this site and showed it to me and I think its fantastic.

In early 2010, I had a 2 month illness with symptoms such as, flu, chesty cough, headaches, pains in joints and muscles, sickness with very bad inflamation of the skin (a rash) all over my body. As I never had this before I didnt think anything of it and never got it looked into.

Then in early 2011 the same symptoms occured but this time it was far more worse. I'd never felt so much pain all over my body that after several blood tests I was reffered to the Hospital to get a diagnosis from a Hematologist, I was diagnosed with Vasculitis. I was ill for around 5 months in total and was never given any medicine to help with my illness as the Doctors said they were all unsure about the illness. I also had Neutrophenia and very low blood counts.

I felt very fatigued all the time, and I lost alot of sleep and some weight.

The only thing that got me through it was my support from my family and partner and I wanted to return to education to become a music teacher.

During this period, it was very stressfull and worrying as I couldnt work

and was worryed about my finances but this illness went and I managed to work for 3 months solid, 60 hours + a week just so that I could pay my dedts off and get ready for University.

I'd thought that was the end of it until Nov 2011 when I suffered with a chest infection, with severe flu symptons and sickness which lasted for about a month.

Which brings me to the present, again in Feb 2012 I have suffered another viral infection, sickness, fatigued, fever etc and has lasted so far 2 weeks. Blood tests reveal counts to be lower than normal but ok. I have been reffered to a Rheumatologist for a consultation for my pains in my joints, which I'm awaiting an appointment date.

Can anyone help me to understand what type of Vasculitis I have?

Are all of my other illnesses related to vasculitis?

Am I more prone to getting infections?

My medical history consists of:

2004: Epididymitis

2006: Back pain

2006: Epididymal cyst

2007: infectious diarrhoea

2008: Acute respiratory infections

2008: Infected sebaceous cyst

2009: Upper respiratory tract infection

2009: cystic acne

2009: cystic acne

2009: Upper respiratory tract infection

2009: Cervicalgia - pain in neck

2010: unknown rash

2010: Upper respiratory tract infection

2011: Upper respiratory tract infection

2011: Vasculitus

2011: Neutropenia

2011: Upper respiratory tract infection

2012: viral infection, small rash & fever

I'm aged 27 and have a strong outlook about this all but and the only thing that concerns me is if this is something now i'm going to have to deal with for the rest of my life? as I can't afford not to work and I'm missing valuable lectures and time at University, sometimes I can't work on my studying because of my illnesses.

I have read alot of other people's questions and I see alot of similar cases and symptons and its nice to know theres other poeple out there who understands what I'm going through.

I'm still unsure as to where I stand with Vasculitus. if anyone could give me advice that would be great.

Thanks for reading

7 Replies

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  • Hi, I am very deeply shocked that you were actually diagnosed with vasculitis but given no more information, no properdiagnosis and then no treatment.

    Can you send me a private message or even better send an email to discuss further, jandsmills@btinternet.com saying whereabout you live or at least which hospital you go to.

    John

  • Hi John,

    Thanks for the reply, I shall email you shortly.

    thanks

  • Hi Johnand Susan, this is not an unusual thing, when I was diagnosed I wasn't given any information, no one to contact,, I felt I was left high and dry.

    Even now when I speak to my consultant he sometimes tells me because, my type is so rare he does not have the answers.

    I have learned more from this site and communicating with people here than I have in all the years I have had the condition

    Many thanks to you and all the team and members who have shared their stories.

  • Hi Chemicoil, I'm really sorry to hear about your illness, your lack of continuing treatment and the lack of basic information from medical staff. You could potentially have any type of vasculitis but as you seem to be suseptable to upper respiritory tract infections I could guess at Churg- Strauss vasculitis but that's only because I have suffered from that since I was 27. I am now 45. Please go back to your gp if your rhumatology appointment is way of in the distane and ask them to have the appointment expidited, when you see the rhumatologist insist without being objectionable ( cos you want them to help) that they carryout tests to find out exactly is wrong with you and a strategy for long term treatment if that's necessary.

    I really hope you get the help and treatment you need.

    Take Care.

    Audrey :o)

  • Thanks Audrey,

    I shall insist on your advice to the Rheumatologist. Again, I have also learnt more about Vasculitis through my on research means.

    There must be a reason to why I'm consistantly ill and fatigued. I think close monitoring / investigation is needed. Hopefully my consultation will shed some light. I didn't realise how many poeple suffered from Vasculitis and from the looks of it, I have it easy compared to others.

    If you don't mind me asking, How is your situation now since you were diagnosed?

  • I was diagnosed really early in my illness but no one here really knewwhat they were doing. It is a rare disease so treatment can be a bit experimental. I have been on pred continuously for 17yrs and I do now have some of the side effects but if I didn't take them and MTX then I would be really crippled with pain and unable to care for myself. I suggest you chat to john and susan about claiming DLA but make sureyour consultant know about all your problems. Mention them every time you see them otherwise they don't think you have any problems.

    Good luck with your subsequent treatment.

    Aud

  • whats the name of your vasulitus u said a rare one mine is a rare one my dr is helping me a lot mine is cryoglobulinemia

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