3 months of illness and no where to turn :(

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Hello,

I'm a 33 year old mum of 2 and for the past 3 months I've been through a awful time.

It all started off I was experiencing the most intense deep burning pickles all over my body. They would come and go in different parts, I was at first describing it as an itch, but it was far more intense.

I went to my doctor who sent me for a CBC and an allergy, diabetes blood tests, all came back fine.

I proceeded to get on with life but 2 weeks on, I started to notice small pink circles appearing on my chest and inside my arms. They would come up and last around 24/48 hours. When they would disappear, new ones appeared.

I was then put on anti histamines, they never worked.

The prickling was getting worse, and one evening coming home from work, I got undressed, and noticed a large bruise on my thigh that appeared with no known cause.

I had been suffering with a severe pressure headache and felt unwell, so took myself to be checked at the hospital. They ran bloods and again all come back normal, however the doctor did mention Vasculitis and I'm to see my doctor.

So i went to my doctor who gave me a course of steroids, and referal to a dermatolist for further investigation on my skin flares.

I got seen rather quickly as I got a cancellation, however the dermatologist I saw said he couldn't do any biopsy as my skin looked clear as since taking the steroids, my skin had calmed.

I explained all my symptoms and was quite distressed as the burning and prickling pricing is invisible and he just couldn't reassure or help me in any way.

Anyway, another werk or 2 have gone by and I am now experiencing new severe symptoms of what seems nerve pain in my hands. It comes and goes but when the sharp sudden shooting pain in my fingers comes on it almost has me in tears.

I have lowered my steroids as the doctor has told me to seen myself off, and now I'm noticing the pink raised spots on my chest are coming back.

I also notice that when I get this sharp burning prickling sensation, I have tiny purple dots come up on the skin.

I feel like the doctors are looking at me like it's all anxiety related, and I'm so fed up beyond words.

I have a one year old daughter and 7 year-old son and before 3 months ago, I was a happy energetic mum who was in good health.

I am only anxious because of what I am experiencing and not seeming to get any answers.

I also the past week have been having the shakes, my arms are very weak and having severe pressure headaches. Could this be to do with the steroids?

I am here because of the doctor in the hospital mentioning his concern of vasculitis.

However my doctor is very dismissive of anything as all my blood tests have come back normal.

This has made me anxious and I am so worried. I know something's not right and I don't know what to do next. I just want treatment and to get to the bottom of this.

Does this sound anything like vasculitis related and if so what do I or my doctors need yo be doing?

I really appreciate anybody's time,

Thank you

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4 Replies

  • Posted

    Hi yes it does sound like that. I have a disorder which can involve vasculitis and yes had some of your symptoms though never skin symptoms particularly.

    I would suggest you go to a different specialist if you are unhappy and worried. You have a right to proper treatment. Take pics to log any skin problems. Are you in the UK? If so there is a great helpline Vasculitis UK which is a support group. Speak to them.

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  • Posted

    Oh i did type you a full reply but site went wrong.

    Basically yes sounds like a from if vasculitis. Had mine 12 years. Rash especially and itch thing but not an itch. Not all people get the rash and sometimes i do not either. There a lots of types of vasculitis but mainly first treatment is steriods. Steriods will mask the blood test results etc. Hence hard to diagnose. A good Vasculitis Consultant will go by symptoms initally. Yes steriods do not agree with agree with some people, but it is rare. There are two types of steriods. I alternate from one to the other. Sometimes doctors find i am better with anither ine. There is prednisone and hydrocortisone. The skin biopsy won't show up results if rash not there. They have to catch it ripe. I felt the same as you. Yiu could be dying with no rash it won't show results.

    As Margaret stated if in UK please get in touch with Vasculitis UK they have a helpline number. Everything eg doctors symptoms tests etc they will advise

    I contacted them many years ago when it was only husband and wife. They helped me. If USA look for their site. I know a lady who has same Vasculitis as i do she writes and attends meetings with them. She is brilliant. There is a canadian one too. Please contact one asap. You need to get properly diagnosed. The sooner the better. Earlier they catch it less damage etc. Steriods good start off though. I am on steriods 12 years only because i am allergic to drugs that work. Steriods keep me alive. All types of Vasculitis i have rare one. Do not worry i do not think you have mine as it starts with other symptoms first. But the itch non itchy thing pain rash it goes with lots of Vasculitis forms. Please let us know how you get on. Oh stress makes it far worse. A vasculitus organization will tell you what tests too. I had many. Good Luck. Above all get help and go to best dr yiu can.

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  • Posted

    If you are in hospital locally and the doctors don't know how to treat you etc give them a consultants name who does know. Some doctors are more than willing to liase or even transfer you to specialist from the hosoital you are on. Has happened to a few friends who were ill and local hoslital had not a clue. They got ill and still had another 3 months to wait. Local hospital phoned the consultant and they transferred them by ambulance.

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  • Posted

    Hi, 

    I’m 22 years old  and I had similar problems with you regarding being pushed away by doctors hospital etc for a year saying they’d referred me to a specialist when they never did. Your symptoms of the ‘wheels’ and burning/pain/ bruising of the skin surrounding the urticaric wheels sounds exactly the same as mine. Doctors said oh it’s an allergic reaction, it doesn’t hurt your bones or burn it’ll go but it never did and just progressively got more painful and had more of an effect on my life. Anyway- after the 7th hospital admission a doctor said I think this is something more serious and had a dermatologist come see me in hospital (it was a really bad break out I have them everyday but sometimes they get that bad I can’t cope and my face swells like the elephant man hence hospitalisation). I told him how the doctors treat me and he said they shouldn’t but there’s a thing called ‘choose and book’ so if the doctors or specialist you’ve seen cannot help you, you can find a specific specialist which may be private and be referred by the doctor on the NHS because they have to treat you! Since seeing the specialist I have been diagnosed with urticaria vasculitis and angeoadema by a dermatologist and he has currently put me on colchicine 500mg and hydroxychloroquine 200mg as well as the current antihistamines I take everyday which seems to have worked as They have not returned- I am also not sure if you have but there are 2 different types of antihistamines H1 (regular such as chlorphenamine/ fexofenadine) and H2 (ranitidine/ montelukalast) I take both Ranitidine and montelukalast which can be perscribed by your GP not a specialist and I also take fexofenadine. I hope this can help you and remember there is doctors out there that understand this illness, don’t let it beat you like it nearly did with me! Thank you. 

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