recently diagnosed with vasculities

good afternoon,

at the end of last year i had a biopsy carried out on my feet due to staining on the tops of both of my feet and the result came back that i had vasculities but since then i have constantly got worst my legs are constant aching ( i wear compression socks all the time now) when at home i sat down i am constantly moving because i cant get comfy, i have had a ultrasound carried out on my liver and they said i had a bit of fat but nothing to worry about. but over the past few monthes i have had a number of blood results done and they have said my alt levels at the minute are 85 and that my ggt levels are like those of a heavy drinker (i have maybe one drink in a 2 week period) my last ggt was 151. (each blood result has come back with abnormal ALT and GGT levels) my doctor is now making me see a heamatolagists. i have had all sti blood tests come back negative. is there anyone out there that might could share some light for me maybe there is some that has had the same symptoms that i have described or could shade some light as the doctor i am seeing at the minute is not that helpful.

any comments or pointers would gratefully be received

Mat

4 Replies

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  • Hi Mat

    Did they say which of the vasculitic diseases you have? Are you on any medication?

    An unhelpful consultant is not very good. Sometimes they think we are just happy to take what they say but a good physician will take time to explain matters. Make a list of the questions you want answering, ask them and if you aren't happy ask again. Don't go to the consultation alone. There are things we want to ask, and we only remember as we leave the consulting room. You are, to some extent, in their hands, but you have to be your own advocate in the vasculitis game.

    Have you looked at the Route Map for Vasculitis? You may find some answers there. vasculitis.org.uk and follow the links. If you prefer, send me a private message with your e-mail address and I'll send you a PDF copy.

    PatriciaAnn

  • Hi I have wg my liver is pretty knackered with one test always reading in the high 300 instead of 15-30 and another again in high 400 instead of 30 50 Consultant has siad that when levels reach about 1,000 my liverwill be useless but cannot decrease med as wg will flare nit of the devil and deep blue sea. I have just been given quinine to take at night as i get really painul restless legs dont know whether this may help

  • I have Churg-Strauss syndrome but was not diagnosed until the correct blood tests were carried out while in A&E. Because I was in so much discomfort and pain in all limbs (no swelling) I was like a cat on a hot tin roof and subsequently went to hospital on a 999. If any treatment is ineffective and you are in pain don't hestitate to do this. The vasculitis was confirmed by a 'rheumatology consultant' who new exactly what to look for.

  • been a long tiring year, as recently left the forces, but it seems that my Vasculitis has got worst, i have constant aching more so then before im on co-codomol all the time as well as tablets to help me sleep, i have noticed when i have a flare up on my feet(new bright red blemashishes on the tops and sides of my feet) the aching is a hell of alot more which i am unable to sleep, having gone back to the hospital before i left NI the dermatologist i saw said that it didnt look like Vasculitis but shamzberg disease, even though biopsy came back Vasculitis, having now moved back to the UK i might get to see someone who knows something more then my last GP/doctors

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