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Hello, Have just received a diagnosis after ... - Vasculitis UK
Hello, Have just received a diagnosis after more than 5 years, not spoken to Doctor yet, i have Leukocytoclastic vasculitis does anyone else
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nesbitt
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I was diagnosed in March this year. Have seen 7 consultants, being led by a rheumatologist. Have been in and out of various hospitals
nesbitt in reply to
I am guessing once they diagnose LV then the long round of tests begin to find out how it affects you?, it seems to be very hit & miss with consultants as to what they do or don't understand about it?
I was told by a rheumatologist I probably have this too but 3 other Drs disagree so I am still unsure. Do you mind me asking what they based the diagnosis on?
Hi sus29, It's been a long haul getting that answer, i appreciate how you must feel as you end up wanting a name for how bad you feel. Have had lots of tests a skin biopsy last year that showed inflammation disease but nothing was done i didn't have the rash when the biopsy was taken (my main symptoms are lower leg burning rash) however in early October i suffered a severe form of the rash & took myself to A&E as i felt so ill, i had high BP, fever & very high resting heart rate, i was booked in the next morning to see a dermatologist (have seen one during the 5 years & was given cream for dry skin!) i had another biopsy taken from the active rash, & bloods that were sent off somewhere specialist! I received a letter yesterday telling my the skin biopsy showed i had LV, i have an appointment for 23rd Nov where they will discuss the result & treatments! If you are having the rashes then you need to get it biopsied when active this was the only way after all these years for me to get that answer, hope you can get sorted very soon x
I was diagnosed with this last year after a skin biopsy. Now I have been diagnosed with fybromyalgia too. Nothing is happening regarding the vasculitis. I know that I feel ill, but no one is listening to me! 
Gosh you'd think after the diagnosis of LV then being diagnosed with fybromyalgia they would be making things happen, i know what you mean about feeling like no-one is listening to you, can you take someone with you to the appointments who can be a voice for you?
Nesbitt I too have the same diagnosis from a biopsy taken from the rash I had on my leg. My initial vasculitis diagnosis took me 7 years because the GPs were convinced I was a hypochondriac, always coming in with something different and they suggested I should have cognitive behavioural therapy. You must be taken seriously, it is a serious and unpleasant illness. Good that you have a diagnosis, follow the trail! Read the Vasculitis route, it is very helpful and may help your doctor too.
Yes there is a lot to learn regarding LV, mine was a biopsy on lower legs that finally gave me an answer too! I began dreading having to go back to see my GP about anything in the end as i always felt he thought i was making things up, it's pretty bad when they make you feel like that. Started on the vasculitis route yesterday, very good & imformative, thankyou for the reply.
I wrote down every symptom I have from sinuses to kidney problems etc etc and told them to the rheumatologist but she is only bothered with pain and told me that I have to see my gp for referral to specialists in all the other problems! I am so fed up I just don't want to go. You are the first person I know who has been diagnosed with the same vasculitis as me! I was (and am) feeling very alone.
My husband always comes to appts with me, but he is just grateful that I am not as ill as I was last year (month in intensive care with auto immune hepatitis caused by a antibiotic! )
It's such a shame you are feeling how you do, it's very frustrating, trying to get through to the consultants when it seems a lot of them are unaware of all the symptoms, having your GP do the referrals is all about money, i know because i had made a complaint last year about delay's in referrals & follow up appointments & had a meeting with management it's disgusting that's the way it is now, apart from the money side of things it also adds weeks onto your waiting time, while letters are dictated & sent back to your GP who then makes the referral to different department, who then at some point send you an appointment often up to 8 weeks away. I do hope you can get sorted, they tell you to try & avoid stress yet the system when dealing with these illnesses just adds to the stress, i have over the last frustrating 5 years realised that sometimes being too pleasant get's you no-where fast, sometimes have to make a noise to be heard if you are not happy about something tell them, also having a list of questions you want to ask, much easier when it's on paper in front of you! i am busy doing a list now ready for my appointment next week as the only information i have about LV is from Vasculitis Uk. Hang in there & feel free to write when ever you wish, i will post again next week after my appointment (it's with a dermatologist)
I too have had an anti depressant suggested to me, ugh - the only thing upsetting me is not getting an answer or def diagnosis! I was diagnosed with SLE (lupus) in April 2011, and my rheum is saying the LV is secondary to that condition. I have not had any leg rashes, just an isolated purpura appearing on the back of my right hand every couple of months since the beginning of this year. One was biopsied but it was day 4 after appearing. The biopsy showed a definite pupura but with no inflammation present. I also have intermittent neuropathy with low level ANA and rheumatoid markers. My calves get very cold and sore, and 2 months ago I developed nerve/muscle twitches, mainly in my legs but elsewhere as well. One Dr I have been seeing (who says I have never had lupus, and no secondary vasculitis) is saying most of my symptoms can be caused by thyroid/adrenal issues and is trying to sort those out. This is so hard, as I too am feeling like a hypochondriac doing the rounds of Drs and specialists. I have a referral now from a neurologist for a brain/spine MRI to rule out anything going on there which is v frightening. I just want to feel 'normal' again. If the 1st Dr was right, and I do have LV, I just want to start some sort of treatment.
