Having episodes of feeling very unwell but cant really explain how i feel. Latest episode last night which lasted more that twelve hours...i felt a surging through my body and had pains in my neck, shoulders, stomach area around ribs. Felt restless and could not sleep...this morning found lots of small bruises on arms and legs and tiny purple spots on chest area. My symptoms have been coming and going for months now and bloods do not show any imflamation alough i feel that i am having some kind of attack on my body when i expereince the surges.
Any ideas would be appreciated..i know something is very wrong but after seeing different specialist for various things i still have no answers.
Thanks
Christine
Written by
yorkshiregirl44
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It is often very difficult to put a name to an autoimmune illness and it is thought the average length of time to diagnosis is around 10 years. I know this isn't any help in terms of "I need an answer" but that is the reality I'm afraid. In the end, it is often a case that you see a doctor who has seen something similar before and acts on a hunch.
I assume you have taken photos and are keeping a detailed diary of episodes? That is perhaps the best you can do for the moment - that at least shows your GP you have a "real" problem with physical manifestations. However - if you mean that your ESR and CRP are not raised and that is being taken as "no inflammation" - that doesn't always apply. I have a form of vasculitis, my ESR has never been above 7 and my CRP is usually well under 1. On one occasion the CRP was raised - by the next week it was back to normal.
I also know what I'm about to say is difficult but try not to obsess with what it is. Even with a name there may not be an answer to it - there is rarely a pill to pop and all the nasty things go away.
Yes im getting my daughter to take photos of bruises ect. Its difficult for me as i have a fibro diagnosis and doctors loo no further than that. Thanks
Hmmm - Yes, I've realised that fibro has become the go-to for "I don't know and I can't be bothered" in the UK too (has been for ages in the US). I don't know I've ever come across anything that says fibro comes with vasculitic-like rashes though!
I didnt meat the criteria for fibro but the consultent was convinced this is what i have. I dont now what the rashes with vasculitis are like. I have some very tiny prurple spots mainly on my chest but i have noticed them on my stomach and legs.
You didn't meet the criteria but he chose fibro as the answer? What a prat! Polymyalgic pain syndrome is a presenting feature of LOADS of autoimmune and other illnesses - you can't just choose fibro as the answer. Except since there isn't that much you can do with fibro you can get rid of a pesky patient back to the GP and you can get back to your standard rheumy problems.
If you would like to write an email to John he maybe able to help yorkshiregirl44 john.mills@vasculitis.org.uk
Any autoimmune disease is very difficult to recognise and diagnose, especially Vasculitis as it also has the ability to imitate other diseases.
There is an article written in the Vasculitis UK Autumn 2013 newsletter by Dr Nina Brown called Vasculitis: The Patients Experience
With the assistance of Vasculitis UK, doctors, nurses & scientists with an interest in vasculitis a national survey was created. The full article and results can be found in the Spring newsletter..
The average time from symptoms to diagnosis for Churg Strauss Syndrome (EGPA) was around 35 months, for Microscopic Polyangiitis was 25 months and Wegeners Granulomatosis (GPA) was 20 months.
Many patients were told they had another condition initially eg:- Asthma, Cancer, TB, Viral Infection and even were told the problem was Psychological.
VUK/HU carried out a poll recently and the average time of initial symptoms to diagnosis was surprisingly equal from 6-12 months up to 2-4 years. There are exceptions, as we do know of one or two people where it has taken 5 - 10 years for a diagnosis.
Some types of vasculitis, with some patients, can be particular quick and aggressive and early recognition, diagnosis and appropriate treatment is essential to save lives.
"and even were told the problem was Psychological" - yes, I am convinced that many of the figures for incidences of some vasculitides are far too low because the GPs classify them under "hysterical", "somatism", "depression" and "menopausal". The figure for PMR going into remission in 2 years I am positive has more to do with most patients giving up in that time, whether the symptoms have gone or not.
I did - a consultant didn't, a different GP from usual did. She'd seen it before and was happy to prescribe prednisolone since I'd responded so well to it. Since all that really can be done is treat the symptoms and pred dealt with the symptoms that was fine. It's been up and down for nearly 5 years - but now it's looking fairly good. That's fine by me.
I can't really add anything, to what has been said above, but please do speak to John-if you haven't already done so. I don't know about diagnosis taking quite as long as fifteen years- maybe, but it does sound an awfully long time to me! It only remains for me to send you my best wishes, and also my prayers- please do try to keep 'well'.
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