New Rash on Limbs.

[LauraMk30]

Hello all 🤗

I'm a little concerned to what this might be as I've not had it before, felt really run down yesterday& this Rash appeared around 6pm of yesterday eve. & i am even more tired today Rash is the same today & my legs are blueish & blotchy. Please please please.. can some one advise me😪

[Hidden]

Laura,

It looks like a classic purpuric rash. You need to either go to your GP or take yourself to A and E in Birmingham at the Queen Elizabeth if you aren't getting anywhere locally.

I am not sure what more we can say or advise. You have features and positive blood tests which indicate some sort of auto immune disease. You need to see a specialist to get a diagnosis confirmed. Your treatment locally has been poor. All we can do is suggest who you need to see ( The Vasculitis clinic in Birmingham headed by Prof Lorraine Harper ) we can't organise a referral. You need to start making a big fuss, getting all this documented in your notes and writing letters of complaint. It's hard I know but I am not sure what the alternative is.

[LauraMk30 in reply to Hidden]

I'm Sorry Keyes,

I might sound like I'm totally nuts at times, & desperate. Well I am, desperate that is.. the Rheum I was seeing has gone back to his original hospital & we cannot contact him. I've only just convinced the doctor to see me today at the end of surgery. My dad has written to them on my behalf expressing his concern. & we've been pushing my hospital to see me quicker but nothing has been done. Birmingham QEH is the next step, I don't drive & I can't really get out of bed, so my dad has too book some time off work in advance to take me there. VUK is the only way I can talk to people who know about how I feel, otherwise I'm just alone. Waiting.. worrying.

Thank you ever so much for all your help concern & supportive advice. It's gone a long way and I know now after all your expert knowledge I need to see someone who specialises in vasculitis not someone who treats me if I am a complex human being & my condition is a burden. Your help is more valuable than gold x

[Hidden in reply to LauraMk30]

Laura,

You need to ask the GP to admit you. If they refuse then get them to document your request in your notes and it's probably a good idea to record the conversation as well.

Please don't apologise, you are in a horrid situation and have been let down very badly by the NHS but the only way to deal with this is to take yourself to Birmingham A &E or let your GP know that you won't be treated like this any longer and that they will be held responsible if you develop complications/ end organ damage.

[LauraMk30 in reply to Hidden]

Hi Keyes

The doctor didn't see me Thursday.

So I was on triage list Friday around 6. I showed her my legs, & she said they didn't blanch when touched. Nothing to worry about.

She said " it's all apart of your vasculitis" I said there is no proper diagnosis. Yes a positive ANCA but awaiting the significance?

I mentioned I want to be referred to Birmingham hospital. Shes made an app for me to see another doctor for next Wednesday.. see if they can refer me & I told her no more games. This is my life & I have a 13 year old son to look after & I need someone who knows how to deal with vasculitis.. & treat it. Not leave it for months on end. I'm not willing to wait anymore, I recorded the whole appointment.

She said it will take a while for the MPO & PR3 to come back could take a month or 2.

I've requested my medical records again...

I want them in full.

& my dad is emailing Proff Lorraine Harper.

X

[Hidden in reply to LauraMk30]

Hi Laura,

I have my fingers crossed that all your hard work pays off. 2 months for PR3 and MPO is outrageous, 2 weeks is the longest I have ever come across and labs will run a same day test in an emergency situation.

I hope that Prof Harper responds to your Father, I certainly e mailed Consultants regularly in my 4 year diagnosis journey and found it helpful.