Apparently I only have lymphocytic vasculitis which means that I only get itchy spots.
I saw my Dermatologist today and came out feeling a fake and a fool. I just need to use the cream and take antihistamine. My joint pain and extreme tiredness has nothing to do with the type of vasculitis that I have and any other problems... so I'm told. I was given Hydroxychloroquine last time - which I couldn't handle - much to the annoyance of the Dermatologist.
It felt like I was being told that I'm a whinger and that I'm making up connections with symptoms.
I know that my health has gone downhill...
I was offered a referral to a rheumatologist - but I'd rather go back to my GP and get a referral through her. I've lost all faith in the Dermatology department at that particular hospital...
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ouscribe
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If your tiredness and joint pain is not due to your vasculitis the docs need to look further to see what is causing it rather than make you feel you are imagining it.. Unfortunately it is one of the perils of having a rare disease - some of the doctors don't fully understand the illness or what we have to go through on a daily basis. Can you ask your GP to refer you to a hospital with a specialist Vas clinic? It may mean more travelling, but will more than likely be worthwhile for you.
After thinking more about it, that's what I intend to do. I was pretty low when I got home - but now I feel more like fighting it. I looked up lymphocytic vasculitis and joint pain and tiredness can be part of it - despite what I was told this afternoon! I think/hope that my GP will be willing to refer me further afield...
I also have Fibromyalgia - so any extra symptoms have got the Fibro treatment... Blame it on the Fibro...
Go and see your GP and ask for a referral to see a Rheumatologist who will understand about Vasculitis. As Mooka has suggested. Not sure where you live but we do have names of doctors who might be able to help.
I was offered the Dermatology special clinic. Apparently three consultants meet up and you see them. The junior registrar said yesterday that they see difficult-to-diagnose cases and that she knew that mine was only (only being her word) lymphocytic vasculitis - but if I wanted to see them it was up to me... I'm sure it was all said to shut me up.
John - you gave me the name of a rheumatologist in Doncaster, but I'm not sure where I put the piece of paper I wrote it on (sorry...). I am awaiting and appointment for a gastrologist re my liver etc. at the moment...
Do what you think is right for you, my dermatologist told me I had just got eczema, which didn't warrant the emergency appointment I was given. Four weeks later I was in hospital with Wengers upper airway and kidney damage. On chemo and a eight week stay in hospital . learnt from then that doctors are there to help us and not to take everything they say as gospel. To ask lots of questions.
How dare anyone make you feel a 'fake'! I'm sorry but your description makes my blood boil- NOT with you but your doctor/consultant!!! I agree wholeheartedly with John, I often do, go and get a referral to the 'right' people. You do not have 'only' or 'minor' problems- you have a potentially fatal condition! With the right support you will, the same as us all, have a good chance of survival.
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