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[sandy5]

Hi ..... 7 weeks ago my right eyelid puffed up, it looked very unsightly and I went back and forth to the doctors and was told it was conjunctivitis, bletharitis, an allergy, etc. at the same time I noticed an odd "bruise" on my left calf, it didn't hurt, but kept on growing. After that I hurt my knee, I didn't remember doing it, but we'd been on a long walk with friends and I figured I'd sprained it. My knee got worse and worse and an odd reddish/purple "bruise" appeared on the side if it which hurt and is hot and angry looking and is still growing. The "bruises'" popped up all over the place, and both legs are covered, but they're not raised/palpable. The GP thought I had cellulitis and put me on antibiotics, steroids and antihistimines, and ATM my eyelid is back to normal, but nothing else's got better. I've been to see a dermatologist who thinks I have some form of vasculitis. She's done a skin biopsy and the results should be back in about 10 days. I've been told to take neurofen, sit with my legs raised. Today has been a good day and I feel quite well, but yesterday everything hurt, I felt as though I had flu and I couldn't get my knee comfortable at all.

Has anyone had anything similar ... It all seems so strange. The bruises also seem to fade and then get angry again ..

[fillyhome]

Hi Sandy5, Welcome to the vasculitis group. I cannot give you any advice on this particular type of vasculitis, as I myself have wegners and I do believe that treatments vary depending on which type you have (mine affects my kidneys ). However I just wanted to say hi, I'm sure before long you will have many comments that will help you and you will not feel alone. Good luck and hope your feeling better soon. Take care , Jenny xx

[LynneJ Vasculitis UK Volunteer]

Hi Sandy

I have MPA and my first noticeable symptoms were like patches of red on my ankle, as time went on they appeared on other parts of my legs and arms but the only hot one was on my ankle (I later found out I has Arthralgic so I suppose that was the pain in the ankle) and I had lost the feeling in that foot. Know one has ever told me what they were, one doctor suggested inflammed capilliaries. Mine also used to come and go.

A skin biopsy might not be conclusive. Have you had blood tests? Ask if you can be referred to a Rhuematologist especially if you are gettting more tired. Have you noticed any weight loss? It would better to be safe than sorry, as it does creep up. I also have chest problems.

It is a peculiar thing as all the symptoms seem minor at first and not connected at all. It is not surprising it is hard to diagnose.

Does your GP know about Vasculitis? If not point him/her to the website vasculitis.org.uk. I don't know if you have seen it but it has all the information you could need.

Keep in touch

Lynne

[sandy5]

Hi Lynne ... .thanks for the reply.

Yes they did bloods and the biopsy, i agree with being referred to a Rhuematologist, I'll speak to the consultant when I see her next week. I've not had any weight loss (unfortunately). I had a great day yesterday and felt really upbeat, spent the day on my laptop working happily on the sofa with my legs raised (as I was instructed to), but it all changed during the evening, my right leg/knee just throbbed and really hurt and it didn't go away it kept me awake all night as I just couldn't get comfortable - I've been told to stick to nurofen for now and that just didn't want to work.

I'm finding it all very scary, I need to stop feeling sorry for myself, I must have got myself way overtired last night as I honestly thought this was going to be the end of me.

Really appreciate your support.

Cheers

Sandy

[Ayla Volunteer]

Welcome to the site, Sandy! I have not experienced any painful bruises, as you describe, but just wanted to reassure you that it seems that all is being done that can be done at the moment if you have had blood tests and a biopsy and you are to see a rheumatologist next week (though I wouldn't hesitate to ask your GP for stronger pain relief if you need it).

Make sure you make a list of all your symptoms for your rheumatologist before you go to his appointment, even the minor ones, as it will all help him see the full picture. I am sure he will give you more bood tests,etc but will then be able to start you on an effective course of treatment and you will feel the relief of knowing what is wrong with you, as well as feeling somewhat better, once the treatment starts.

I know it is scary, all this is so unfamiliar and unpredictable right now, but don't despair, things will get better. Just don't be too 'brave'. Yell towards whoever can help when you need things and remember, we are here to give you advice and support.

Good luck, let us know how things go.

Ayla

[cedric]

hi sandy5 have you had blood tests done I went to my drs because I had the same but mine was round ankle area my gp sent me for blood test mine did the same disappeared then came back

[JontyW]

Hi Sandy,

I was diagnosed with CSS (Churg Strauss Syndrome) on 22nd April 2013 .. and am currently in week 10 of treatment. You can read my story here ...

vasculitis-uk.healthunlocke...

I see that you live not far from where I am in Yateley, NE Hants, so wonder if your hospital is Frimley Park or perhaps the Royal Berks at Reading? I'm happy to make contact if that would help with your concerns.

Jonty

[JontyW]

Sandy,

Please update us with the current status on your condition since the last posting you made was on 30 April which was 8 weeks ago.

What did the biopsy and blood tests show and what conclusion did the consultant come to?

Thanks

Jonty