im new to this site. I am awaiting my 1st appt to see and or to begin tests to see if i have vasculitis..... suffering very many symptoms over many years....... I have vitiligo on arms shoulders neck face....... its pretty visible and i am conscious of it...... If anyone can guide me as to how to get best from my 1st consultation.... symptoms...... meningitis type rash knee to toes both legs on and off over many years, renal function altered, low folate, low calcium, Pains hands wrists and knee to toes, heavy tingly legs that swell in afternoon evenings, can keep me awake, bleeding gums, chest wheeze that wakes me up, runny nose that wakes me up, localised spots regularly on nose only, abdo pain left hand side under ribs on and off. Altered bowels, mobilizing am and from sitting can be difficult to get going........ gosh im falling apart ...... any help advice would be so welcomed. Also have low calcium , low folate, and on and off freq....feel pretty old at 52.....

4 Replies

  • Hi. I'm also another newbie here. I was diagnosed just under three weeks ago so this is all very new to me too. I've been struggling for four years to get a diagnosis for the nerve and skin problems I've been experiencing - livedo all up legs, ulcers, swelling, raynauds, sensory loss in hands and feet, loss of strength and muscle wasting in right hand etc. I've just had my second cyclophosphamide IV treatment yesterday (hence I'm up at silly o'clock not being able to sleep - lol!).

    And I absolutely know what you mean about falling to pieces - I'm 46! Although I'm not really in a position to offer advice, the only thing I would say is to keep pushing your doctors if you believe it is vasculitis - I had a biopsy back in 2011 which came up negative for vasculitis and it was only a repeat biopsy a few weeks ago (as carried out by a consultant who didn't believe it wasn't vasculitis) which gave me a proper diagnosis. I also ended up taking lots of skin photos and writing all my symptoms down so I didn't just ramble incoherently at my various doctors!

  • Hi Indeeditsme,

    So sorry to hear of your issues. I'm a qualified skin camouflage practitioner and help people who have vitiligo too. It's just one more issue I'm sure you could do without! Please private message me and I'll try and help you with ideas on products you can use that will greatly lessen the appearance of your vitiligo. :-). (Please note, I DO NOT sell products).

  • Dear yesitsme,

    Well I'm definitely NOT new to all of this! I was diagnosed seventeen years ago and have had a kidney transplant- but enough about me! My advice, as a bit of an 'old timer', is do speak to your doctors/consultants- make them aware of all your symptoms, even if they seem 'trivial' to you. You should have a consultant who is in overall 'charge' of you, passably the one from the hospital you attend. If you don't have an obvious 'figurehead' maybe you GP could help here. (A friend of mine who, whilst not having vasculitis, does have a number of different doctors looking after her and no-one seemed to know what everyone else was doing- the inevitable chaos was causing her further stress. She managed to make her GP an 'anchor point', through which everyone had to co-ordinate her appointments.)

    Please do feel free to 'post' other comments/questions, to us all- we don't bite (well not hard anyway!). I can safely say that we all do our best to support each other with advice and, more importantly, our shared experience(s). I hope you find this as valuable 'forum' as I do.

    Best wishes AndrewT

  • Hi Indeeditsme

    If this is your first appointment in a new department it is usually, but not always, your best chance to get everything on your records. As Bindy68 says a good idea is to write down all your symptoms, including your vitiligo, also write down your list of questions to jog your memory when you are there otherwise you come away and realise you have forgotten something. If you have rashes that come and go take a photo of them with you. If you have someone that can go with you that's also helpful as it's difficult to remember everything you are told. A lot of us have been told that we don't have vasculitis only to find out that we do. Good luck I hope you get a diagnosis soon, whether it is vas or something else, at least you will know what you are up against. Do post again and let us know how you get on.


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